Fibromyalgia and the Tiger within

new blog site

2011-07-25T22:16:00.000-08:00

I've decide to create a new blog site

fibrotiger.blogspot.com

this new site will address my fibro...as well as other life issues that are more pertinent to my family life and the day to day living I do

so please switch on over to my new blog and I will bring my links over with me....thanks

slow moving

2011-07-16T18:26:00.000-08:00

I have attempted a post several times in the last few weeks...but every time I try it just doesn't seem to flow/work.

My fibro has been quite out of control, but as of Thursday I think I'm getting back on track. I've been having a really hard time advocating for myself with my doc...partly because I've been so down, and depressed about my situation. The pain has been non-stop and at least a 7 on the pain scale pretty much daily for a couple of months now and I think it just wore me down...to the point I was so overwhelmed that even advocating for myself seemed impossible.

BUT, on Thursday I went to the doc for the 4th time in about 6 weeks and just put everything out there. We had tried doubling my savella a few weeks back and that went horribly! I was so nauseous 24/7 I couldn't do anything...plus it created just mind numbing anxiety. Every time I laid down to sleep I felt like I was suffocating and had to sit up....NOT a good thing. I took myself back to my regular dose after toughing it out 17 days...I just couldn't take it.

SO, now I'm taking my regular dose of savella, with Lyrica added in twice a day, and I'm no longer taking tramodol (which hasn't helped my pain for some time now), and I'm on vicodin. It's 3 days in and my pain seems better under control...not where I ultimately want it yet, but it's a start! I'm feeling a little loopy on the new meds, but I'm hoping that will pass as well.

Joined Twitter today...not sure why, but I thought I'd see what it's all about...so look me up or send me you twitter names if you are on too. My name is FibroTiger

Hope you are having a pain-free day!

Hobbz

treading water

2011-05-08T08:17:00.000-08:00

Lately I've been feeling like I'm treading water, in all aspects of my life. Maybe even more accurately, swimming against a strong current; as soon as I look at the shore to see my forward progress....I lose all that progress and more.

In terms of my fibro, I seem to be all over the map! One day I feel empowered and confident enough to psych myself up to no longer hide the disease...and then the next, I feel horribly outcast and want to make it appear as though I'm in a constant happy and healthy state! I think, at this point in my life I'm feeling like people think I'm lazy or a failure...because I don't work etc. So I'm hesitant to let them know I'm sick and in pain as I don't want to foster that feeling. Reality is however, that I can't possibly know what someone else is thinking...AND...there opinion about me is none of my business, and in the grand scheme of things in my life, their opinion is not important!

I seem to go back and forth, back and forth like a pendulum, but I never find the middle ground...I seem to live in the two extremes. I really really hate the "invisibleness" of this disease! I struggle with peoples doubts that I am sick, because I look fine. I could be in horrible pain, and dead dog tired, but those around me don't see it, unless I tell them. My family of course knows, and can see what I go through, but the outside world really doesn't have a clue. I perpetuate that doubt, by not being honest about how I feel, so i'm a guilty party in this bizarre dance as well.

I can't quite put my finger on why I struggle so much with sharing how I really feel with folks. I don't want to be that whiny person, that sounds all dramatic and pathetic, by never being ok....but on the other hand I don't want to continue pretending that all is wonderful in my world when in reality it absolutely isn't. I also hate making other folks uncomfortable, and I see people struggling with what to say or do, when I mention my fibro. Again though I'm reminded that your opinion of me is none of my business....argh!!!!! See even in this post I'm going back and forth, back and forth...no wonder I can't keep my behavior consistent.

I want to live in my world with honesty and grace. I want to be able to honestly share how I am with people without sounding like a drama queen. I want to share and portray a person to the world, who has a devastatingly difficult disease, but who is managing and still getting by....I want to show that yes, I have horrible horrible days....but I'm still me, and I'm still surviving, and that I'm just as worthwhile as I was before fibro....I just have to take care with my body and my health......

ooooooohhhhhhh to be a capable, confident adult......

hobbz

back into a routine

2011-05-03T12:59:00.001-08:00

Well I was gone for 2 weeks to Canada and had an amazing time...came back to a flare, and I was pretty upset about it. A friend pointed out that at least I was having a flare for a good reason, and that she was in a flare after doing nothing different than being at home. It all depends upon how you look at things I guess. Gladly the flare wasn't as bad as some, and I'm pretty much over it :)

Went bowling this weekend and then that night I got all ambitious and scrubbed our tub...wasn't the best decision I have ever made. Usually I don't do two physical things in one day, but honestly, I didn't even think about it. The tub was dirty so I jumped in and cleaned it....well my body has ever faithfully reminded me that this was a poor decision. I'm now plagued with a really sore neck and shoulder. Sometimes I have to wonder if I'll ever learn hahahaha.

I had something new happen while I was on vacation. I started having pretty constant pain around one of the trigger points on my lower back...it got to the point where moving from lying to sitting or vice versa, was extremely painful. As the trip went on of course the muscles around that trigger point became more and more tight and painful. When I got home my hubby was able to help massage out some of the knots, but now that he is back to work, it has just gone right back to where it was. I have an area of about a 6-8 inch radius around my trigger point that will send me through the roof if anyone touches it...I've tried heat, cold, showers, stretching etc, but nothing seems to do the trick. I'm wondering if I'm getting to the point that I may need an injection in that particular trigger point to help ease the pain. Just one more question for the doc I guess.

hope everyone is doing well....I'm losing my ability to type a coherent thought so I'll save the rest for later...

hobbz

My Old Friend....

2011-03-31T08:44:00.000-08:00

Well it seems my old friend, fibromyalgia is settling in to stay. I'm over my flare, thank god, but it seems that I'm just back into the same old dance with fibro....no more break while being preggers, and the lull afterward. So I guess it's be thankful for the reprieve and continue putting one foot in front of the other and dealing with symptoms as they come.

Over the last little while I've noticed that my pain seems to be increasing bit by bit, I'm taking an extra tramadol here and there, more frequently. I'm scared that the savella isn't working as well anymore...but hoping it's just a simple thing. I'm off to Canada for two weeks and will be back at the end of the month. Going to make an appt to see the doc and discuss things for when I get back. I know of folks that take 100mg of savella twice a day, where I'm only on 50 right now. I'm also wanting to look at getting off the tramadol, I've been taking it for 6+ years now, and recently found out that it can affect sleep. From my research it seems that MS Contin is a reasonably successful drug, as it is time released...but the scary thing is it is morphine...and that's upping the ante a bit. Not sure what to do, but I guess between my doctor and me, we will figure something out.

I worry because I tend to become resistant to meds over time, which doesn't seem uncommon amongst my fellow fibromites. Eventually though, I'll run out of options, is my big fear. Will the disease progress that far? or will it just kind of hang out here and I'll work around it? I've already altered so much in my life to deal with this disease and when I talk to folks who are in wheelchairs or really restricted movement wise I get scared. I use a cane periodically, but my pride keeps me from using it as often as I should...and I tend to only use it when I'm pretty certain I won't be around anyone who knows me. I know this isn't a healthy way to deal with my situation...but it's what I do. Trying to get over that stigma that I have. I worry because people already don't understand the symptoms that come and go, and that I have good and bad days....what will they say if today I have a cane....and tomorrow I don't? And why the hell do I care????? That's the more important question. Why is my self worth all of a sudden reverting back into what others think of me? I feel like I'm taking steps backwards. It's easy to forget how wearing/tiring constant pain is, and when I'm worn down, I start doubting myself......lots of opportunity to work on me.....lol

hope this message finds you well and having a good day!

hobbz

new week...new symptoms

2011-03-15T12:36:00.001-08:00

So the anxiety of last week has lessened and now I'm into a no sleeping phase of fibromyalgia. I go through these periods frequently...sometimes it's just a couple nights where sleep eludes me and other times it can drag on for days/weeks. I'm hoping this stint of no sleep is a short one. To make matters worse, my daughter too has decided that she needs to get up 2-3 times a night...and not just for a bottle, but to hang out for an hour or two. So I'm up with her, and then when I get her down, my body won't sleep.

It is the most bizarre feeling to be totally exhausted and not be able to fall asleep...i just lie there and lie there, but sleep won't come. I'll read until I can barely keep my eyes open, but as soon as I turn out that light, sleep will not come. My body, however would be more than happy to sleep all day long. I've heard several folks with fms say that they can't sleep at night, but can sleep all day. Yesterday I forced myself to stay awake all day with the hopes that my body would crash with exhaustion last night, but no such luck. Everything seems harder, bigger, more overwhelming when I'm tired...I'm feel like I'm totally raw. Last night I was listening to music from my past and I started crying for no reason...that's just me on no sleep. If I get frustrated, I cry...and just about any little thing can frustrate me.

I also feel like I'm on the verge of getting sick...I have the symptoms of a cold, but not quite if that makes any sense what so ever. My throat feels like it's on the verge of being sore and my head is on the verge of being congested. I awoke with a migraine....but I hate saying that I am getting sick, because more often than not it's my fibro, and it all goes away without me actually getting sick. What an evil disease this is...knocks you down and then kicks you while you are down....at least that's what it feels like right now. I know I shouldn't give human qualities to my fibro, but sometimes it really does feel like the disease has a mind of it's own and it's just f'ing with me.

So on I go, I had such a nice break from the disease when I was pregnant and now I'm remembering what it's like to be back in the trenches with day after day of symptoms. There aren't really days that are good in terms of no symptoms...there are just days where the symptoms are more easily lived with than others. This is where I walk a fine line, with becoming too focused on the fibro. When I do that I lose sight of me, and I let the disease become me...instead of focusing on me, who has fibro. Does that make sense? I am NOT my disease, but when I focus too much on the symptoms...I get in this circular spiral that quickly takes me to a dark place where I let the disease have all the power over my life and I feel helpless, and weak, and I get into a poor me kind of state. I need to find a way to balance the daily struggle that I face, without losing sight that I still have control over my life, and while I can't control the fibro, I CAN control how I manage it, and deal with it on a daily basis....I guess the fact that I'm at least now aware of when I'm slipping, is progress.

so that's my thought for today....hope all of you are having a minor fibro day!

hobbz

A-N-X-I-E-T-Y

2011-03-08T08:16:00.000-09:00

ANXIETY is the word that haunts me today and the past week plus. I've been waking up with overwhelming anxiety and I'm not sure why. Today I have 2 appts. and I feel like I'm about to walk in front of a firing line....by night when the day is done, I feel not too bad...but until baby is in bed and I'm sitting quietly on the couch I'm stressed.
Part of my stress right now is worrying about my health and ability to function when my husband is away 2 weeks a month. As you know I recently went through a really bad flare, and now it seems I'm paralyzed with fear that this will happen again. It happened when my husband was gone and I got through, but the experience was less than pleasant and I'm so worried about it happening again. I know that it will, and when it does, I'll get through...but convincing my emotions to accept this logic is proving difficult.
A friend suggested I see my doc about anxiety meds...and yes I agree, I probably should, but even that terrifies me. I'm trying to be gentle with myself and not invoke unfounded judgement...but part of me is so frustrated with how I'm feeling right now. It used to be so easy...and now i feel like a pile of goo...and I hate it! i see my attitude slowly declining lately and I can't seem to reel it back in...maybe I just need to go through this and get to the other side.

this too shall pass
one day (moment) at a time
what doesn't kill us makes us stronger
it's ok to be where you are
you are not your disease

I agree with all of these...however at the moment I'm struggling to believe them and accept them. I'm like a toddler kicking and screaming on the floor. I don't wanna be sick...I don't wanna be sick! I run all of this through my head a thousand times at day...which it just dawned on me, might be contributing to the anxiety level.....
All I have to do is get through this next minute...

hobbz

When will it end?

2011-02-25T11:35:00.000-09:00

So this is my new mantra....when will this sh*t end???? I've been in a flare for over 3 weeks, as I said in my last post I thought it was waning, and in truth the pain is not as intense, but I am sooooo tired, exhausted, lethargic, I can't even tell you. I struggle to get out of bed, and even to just sit on the couch...what is up. I mentioned to my husband that maybe I'm getting depressed, but he thinks that the flare has just taken it out of me and I'm wiped. Still not sure what the answer is.

All I can say at this point, though, is I hate it, I hate it, I hate it! I can't even think of something to do, that's how low my brain power is right now. My husband is frustrated because I don't want to do anything, and I'm frustrated because I'm bored...yet I lack the will to do something other than sit. Things just aren't right in my world right now, and I'm perplexed as to how I can begin to change it.

I had a weird shaking/weak spell the other night. You know how you feel when you are super hungry and your blood sugar is low. All weak and shaky? That's exactly how I felt, but I'd just finished dinner. My hands were shaking like crazy and I didn't dare stand up for fear of falling over. It lasted about half and hour and then things were back to normal.

Today I woke up with a rather unhappy stomach....got it settled...slept a little more...then woke up again to the same thing. I would just like one day at this point...one day where I don't feel bad. I went a long time without a major flare, and now I feel like I'm being a wimp by complaining about feeling bad for 3 weeks...but ugh this sucks.

I know that attitude is half the battle, but I just can't seem to get my mind to a positive place. I'd like to just lay in bed, with the comfy covers over my head until all this goes away.....

feeling rather lethargic....

Hobbz

flare is waning

2011-02-17T16:03:00.008-09:00

well my flare from hell is starting to ease up...but still I'm so sore from my muscles being so tense, that I feel like I was hit repeatedly by a mack truck. I had a few days of overwhelming exhaustion, where getting out of bed and taking care of my 9mo old seemed monumental. As all things, flares don't last forever and this one has eased up considerably...yay time!

I got an Rx for a muscle relaxant and that eased the tension in my muscles a great deal...I think from now on at the beginning of a flare I'm going to get on muscle relaxers right away with hopes on staving off the worst of the muscle pain.

I've been thinking of self-esteem/confidence a lot lately, and even chatted with some other fibro sufferers today about it. I find it rather interesting how deeply this aspect of my life is affected by my disease. We came to the conclusion today, that a lot of the low self-esteem has to do with the ongoing guilt that we feel. I feel guilty for not working, for not being there wholly for my kids...for taking away from my husband, for not being the person I used to, for having to cancel plans all the time....seriously this list could go on for pages. One chat friend noted that "guilt" should be listed under symptoms of fibromyalgia...hahahaha. But why this crazy self-esteem breaking guilt? For me, I think it's partly due to the inherent underlying belief in our society that one must be an over-achieving, workaholic, pta going parent or we are failing somehow. I've been the over-achiever...I've done the work several jobs until you drop...and did it ever make me a better person???? In my humble opinion...NO! Still somehow I feel the judgement of others in this respect on an almost daily basis. The well meant, however misguided comments, like...."oh I don't have time to be sick"..."if you were more active you would feel better"..."you were fine yesterday, therefore...."..."how come you have so many sick days"..."must be nice to stay in bed so much"...." i wish I could nap everyday"....these statements have that underlying doubt, that you just somehow are lazy or your're not putting in the same effort as everyone else. I'm the one that gives these statements power, by listening to them, but sometimes it's hard not to. I know my reality and I know how toast I am after a day of work...so much so that I can't even spend the evening with my family. I have a new "normal" now, and it involves taking care of myself so that the fibro doesn't take over. People can't see the disease or the disability so somehow it doesn't really exist to them...

On the flip side I contribute to this doubt by pretending that all is well, when talking to or spending time with family and friends. I've seen the uncomfortable looks and endured the stuttering, blundering responses...to my statements that today just isn't a good fibro day....so to save them the uncomfortableness of it...and more importantly to save me the frustration of not being understood or supported, it has somehow become easier to pretend that I'm fine. The reality is tho, that this is NOT the easier route for me...I do have fibro, and there isn't an hour a day...any day, where I'm not reminded of this by my body. I''m never pain free...I just have ok days and not so ok days...so I build up this unspoken resentment towards those I feel the need to act for. How F'd up is that? I'm building a resentment towards them...because of a behavior I have chosen....yikes.

I guess the conclusion is....that if I want to be true to me, I need to be upfront and honest about how I'm feeling at any given moment. Not whine...but be honest. This is the most respectful route for myself and those I love. Even if someone is uncomfortable around me, then I have to remember that that is their issue not mine...all I can do is allow them the space they need, or give them the info they desire to feel a little less uncomfortable.....

not sure if any of that makes sense, or if I'm just rambling...but that's kinda where I'm at right now.

may you all be, kind, honest, loving, and patient with those around you and especially yourselves!!!!

hobbz

It's been a long couple of days...

2011-02-04T14:04:00.003-09:00

I've tried to deny it over the last week, but I'm officially in a flare from hell. Not sleeping, completely exhausted, and I'm in icky icky pain....sigh. At first I of course panicked and decided that the savella was no longer working, but I've gained some perspective again and now I think it just is what it is a flare. I have been extremely lucky in that when I was pregnant my fibro was almost a non-issue so it's been close to 2 year since I've had a really bad flare...so i think that's why this has caught me off guard.

It's one of those flares where you just want to curl up in the fetal position and cry. The good thing however, is that I've been able, for the most part, to keep a reasonable perspective and not nose dive emotionally too. Not that I could have said that at 4 this morning, but I'm trying. Progress not perfection...progress not perfection...this mantra is keeping me going. It's just after 2 in the afternoon and I've been up for 12 hours and my little one is just happy as a clam playing, so I don't think much of a nap is in sight. Emma goes to bed early though so mom will be right behind her.

This disease is one that is constantly with you, but for me at least, still has the ability to sneak up and bite me in the butt...even when I think I'm on top of it. I have to remember that flares are just part and parcel of the whole deal. So yes life sucks right now....and of course my husband left this morning for his 2 weeks away at work...so the baby and I are on our own once again...why would it happen any other way???? We all have our crap, and I guess this is my crap to deal with...so I'll march on, and cry when I need to...rest when I can...and love my little girl the best that I know how.

here's hoping all of you are having a minimal pain day!

hobbz

slowly but surely

2011-01-29T13:48:00.003-09:00

Things are slowly returning to normal. Working from home is going better than anticipated. I've been able to do an hour in the evening and then about an hour and a half in the mornings, which is working well with the baby in the morning. Just about time that Emma has been up for about 45 min and is ready for some attention and oatmeal, I'm wrapping up my work and can attend to her needs.

My husband is home right now, and that makes a huge difference of course in the morning as he takes care of Emma and I can just focus on work. I sleep less when he is home, because he snores. I've found this past week my fibro has been kind enough to wake me up from midnight until about 4am...so I'm definitely lacking in the sleep department. Naps have made it back into the schedule. I'd managed to eliminate them for several months and it was easier to sleep at night...but when I get way behind like this, I have no choice but to nap, otherwise my ability to deal with life and those around me is severely impaired.

I've had several migraines over the past 2 weeks which has been miserable. I was quite surprised when I went to pick up the migraine Rx that I've had for several years, to find out that it actually is contra-indicated with 2 of the meds that I've also taken for years. Why is it that the pharmacy is only just flagging this potentially deadly mix???? I'm not impressed to say the least! So luckily, thus far I haven't had any negative effects with my meds, but the flip side is, I'll have to find something else to take for my migraines. sigh. I'm wondering if I get something like ambien or Valium to help me sleep/relax, if that won't curb the migraines. The trick is to just take them as needed and not become dependant on them...that can be a slippery slope, and I don't want to put myself at risk for dependency issues. Man, while I'm soooo grateful for having found meds that improve my quality of life...it gets pretty overwhelming managing them all, and sometimes I feel like I'm 102 yrs old when I look at all the pill bottles that I have in the cupboard....hahahaha

The weather has been pretty warm and stable lately which has helped my fibro pain considerably! yippee, I always support the weather when it cooperates with my body :)

I hope everyone is getting through the dreary months of winter ok. We are gaining over 5 min of sunlight a day at this point, which makes a huge difference in the amount of light we get over the course of a week. Summer in Alaska is as beautiful as it gets! 20 hours of sunlight a day and temperate temperatures...LOVE IT LOVE IT LOVE IT.

take good care everyone!

hobbz

whew made it thru the last couple of months...

2011-01-15T12:44:00.004-09:00

Once again time has sped by at break-neck speed...but the last 2 months have been really crazy and sobering for me. In early December we travelled to San Diego for 10 days and had an amazing time...it was great to be in semi-warm weather again! As soon as I got back I started work, and that was a total disaster. The first week I worked Wed-Fri, and thought I was going to die of exhaustion, from the fibromyalgia and lack of sleep with an 8 month old, but I made it through. Went to work the following Monday and that night came down with the flu/cold from hell! I was sick as a dog for about 9 days. I know that it was a killer bug, but I also know that it was compounded by the fact that I was exhausted from working. During my sick time off of work, it became abundantly clear that I just can't hack working in a conventional job anymore. While I knew this when I originally left the position, I kind of forgot, because I was feeling relatively good, being at home with the baby...and I was only going back for a limited amount of time. Who can't handle a couple months of work...right? Well apparently I can't...and I fricking hate hate hate hate it. It makes me feel so flipping useless, i don't even know how to express it. I know that I'm doing a great job at home and with the kids, but i hate the thought that my body won't let me work if I want to. The lack of control is quite infuriating.
I keep trying to tell myself that there are lots of folks a lot worse off than I, and that for now I really am enjoying being at home with Emma...but there is still that lingering voice that hints that I'm a failure and "less than" everyone else.
I will get over it, and I will accept the fact as it is...but to be honest it just plain sucks ass! I'm an over achiever by nature, and fms certainly has put me in my place. I'm checking into some Internet stuff to make some extra cash...and I've agreed to work 3 hours a day from home, until my boss can find a replacement for me...only because I felt guilty as hell bailing on them like I did.
This new reality sucks...it's been almost 6 yrs since I was diagnosed and 8 months since I stopped working and I'm still struggling with how this disease takes away from my life. argh. As I'm sure you can tell, I keep trying to tell myself positives...but to be honest right now I think they are a load of crap and I just don't believe them...so at this point I think time is the answer. I need to give myself time to accept what has happened...accept my reality...and realize that I really do enjoy my life as it is today...I just hate this stupid disease. I'm tired of hurting, not sleeping, not being able to handle sound, smells etc...and most of all and I know this sounds weird to folks who don't have a chronic condition, but a big part of me wishes this disease wasn't so invisible so that others could see it and understand at least on some level what I'm dealing with.... we will see what time does for the ego/brain lol

cheers...hobbz

Hellooooo all

2010-11-17T16:32:00.002-09:00

Wow it's the middle of November already, can you believe it? Celebrated my 41st birthday with my husband and two kiddos last week and thoroughly enjoyed it. It was nice and quiet, but having the 4 of us all together for the evening was just what the doctor ordered.

I really don't have much new going on since my last post. I continue to try and manage the stress of daily life, and all that comes with it. Our weather has gotten significantly colder and I notice I sleep less and less when the weather is cold. The good thing is that my pain has been pretty good over the past couple of weeks.

In late December I'm going to help my old job out for a couple of months to help out with maternity and surgery leaves. I will work pretty much full time for January and February and then just on-call to cover vacations etc. after that. While it will be nice to have the extra pay, and get out of the house a bit, I'm pretty nervous about the whole idea. I'm really scared that when my hubby isn't home, it's going to really take a toll on my body....trying to care for a 6 month old and working full time...and then having my son home on the weekends....but it's time limited, and that needs to be my focus. I'm not really sure if this is the best decision or not right now...but it will help out financially and like I said it's only a couple of months. I can do anything for 2 months....that would appall me to do for a lifetime????? right????

we will see....sigh

long week

2010-11-02T14:31:00.003-08:00

Well it's been a long week! Winter has definitely arrived in Alaska, and I'm feeling woefully unprepared for it mentally. I can already see the decline/change in my health.

Also feeling the impact of a lot of losses this week. I've lost some key pillars that I relied on in my life over the last year, and when I'm on my own, with a struggling teen and an infant I have no experience with, I feel pretty overwhelmed. Some of those pillars were people and some were ideals that I had on how things would play out under certain circumstances....I guess either way they are losses.

So colder weather and mental stress always triggers the fibro. Still not sleeping well, and feeling more pain because of it. It's like a vicious circle, when one thing falters it becomes a horrible snowball effect that leaves one exhausted and in pain. It's a lot harder to keep positive during these times....the good part is, that even though I feel poopy, I'm still better off now on the new meds than before...so I guess it could always be worse right?

cup half full and all that :0)

hobbz

the fibro continues

2010-10-22T10:37:00.002-08:00

I know I should have updated sooner, but my doc appt was postponed. All in all things went well, however, and as per usual I let my mind get the best of me. She feels that the joint issues are all part of the fibro, and unless I start getting swelling or pain not associated with caring for Emma...then I'm just fine.

I think part of the issue is that before I was on Savella, I was in so much muscle pain, i didn't really notice the joint pain, and now that the muscle pain is greatly reduced, I feel more of the other fms symptoms.

Been having lots of trouble sleeping lately, and I'm feeling like my old friend fibromyalgia is settling in again after the reprieve of pregnancy. I guess that's just the way it is. Really trying to keep physically active, which is always hard when you're tired, but I know that the payoff is worth it.

I've noticed alot of touch sensitivity lately...does anyone else notice that. We have a super soft blanket on our bed, and I bought it because it was so comfy...but when my fibro is rearing it's ugly head...I can't bear to touch it...it's too soft and it gives me the worst feeling ever.....weird huh

new symptoms?

2010-09-22T19:57:00.002-08:00

Thanks folks for the comments and emails/FB replies to my last post...I truly value all the support that you have given to me.

Things on the home front are slowly getting better...which has allowed me to get more in touch with my feelings and how my health is being affected by all of the drama. I've noticed recently that a lot of my joints are really bothering me/feeling strained. I'm not sure what that's about. My fibro has only ever affected my muscles...so this is new for me. When I cough or sneeze I get a long lasting wave of pain through all my joints literally. Also I seem to have random pain/strain attacks in my joints. Ongoing my left elbow has been killing me...but also my right knee and ankle will just out of the blue become super painful, almost as if electric shocks are going through them...one day going up the stairs my ankle got so bad I couldn't even walk on it, and had to resort to a cane for a couple of days and now it randomly hurts when I put weight on it...put it's totally random and short lived. My right wrist also goes through periods of feeling like it's sprained, kind of like my elbow. I've also had some trouble with my hips...it's totally weird.

I see my doc on the 30th so we will see what she thinks...part of me thinks maybe it's a side effect of the new Savella I'm taking...which would suck since it's helped the rest of my FMS soooo much...but then a darker side of me worries I'm developing something else like arthritis or MS...it's never good to sit with these thoughts for too long....so I'm trying to patiently wait until I see the doc.

In the meantime I'm trying to keep physically active, eat right, sleep well, and continue my counselling to deal with emotional stuff....that's the best one can do for now.

lots of love to all of you! Thanks for being my Peeps!

hobbz

and life continues on....

2010-08-28T20:06:00.002-08:00

Even with my best intentions, it's been a month since my last post....where oh where does the time go????

It has been a VERY hectic and stressful month. Life at home has been rather crazy with my husband and step-son. My step-son has not been well for some time now, and we have ended up with him living away from home and just coming home on weekends. This situation in and of itself is a huge blow and change to our family...but it has created many added stressors for my husband and I. On top of that, as some of you know my husband works 2 weeks out of town and is home for 2 weeks, so only having him around half the time gets tough.

With all of this going on, my fibro has definitely started to flare. It's especially bad when my husband is home, due to the stress in our relationship. It's hard to focus on what needs to be done and worked on when I'm exhausted and in pain! Then I get resentful because I can see the immediate negative response of my body when we are together....this is a tough one for me to sort out. Our family is in crisis...and because of that my fibro is in crisis. Thank god I'm on savella, or I don't know how bad off I'd be...bed bound is my guess.

So right now I'm just trying to take care of myself, and the baby. I've spent the last year trying to make things work out for my husband, and step-son, and clearly the toll that that has taken on my body and psyche is no longer acceptable. It's hard to find balance with this disease, since it's so relentless when we get stressed. I'm working really hard at not being resentful towards those who cause me stress....I'm trying to take the situation for what it is, and work with it, as opposed to fight it. I'm used to always trying to fight for control, and my fibro has taught me, how detrimental to my self that is....I can no longer continue to try and be everything for everybody. I need to focus on me and Emma...my husband and step-son will always have my love and support, but I can no longer be the "fixer" for them or the "organizer" for them...they have to learn to do these things for themselves.

Unfortunately with me changing the family dynamics that drastically, the backlash has been great. How to stay healthy and sane in an insane and out of control situation????? hmmm that is the question. I need to figure out a way to not be debilitated by my disease when the crap hits the fan.....I'm just not sure how to do that as of yet.....any ideas are very much welcome....

hanging in there!

hobbz

Finally...my computer is up and running again!

2010-07-31T21:54:00.002-08:00

I have had my computer in the shop forever!!!! But as you can see it's back up and running, and I am back up and blogging...yay me!

Sooo much has happened in the last 2+ months. Little Emma is the most amazing thing ever...she's close to 12lbs now and we just moved her into 3month clothing...she's no longer our little newborn :( I can't believe how fast she grows and changes, you can see huge differences in a matter of days, with her. The lack of sleep and long fussy sessions are so worth it though....I can't say enough how much I love having her in my life.

Now that I'm no longer pregnant, my fibro is definitely back, but my doctor was also able to start me on Savella since I'm not breastfeeding. I'm telling you folks...it has made a world of difference in my life. Pre-Savella I was taking six 50mg tramodols a day just to manage my pain, on top of the cymbalta which also helps with pain control. Now I am completely off the cymbalta, and I take one-two tramodols a day for pain! It is so flipping awesome. What I do notice however is that with the new baby my muscles are very unrelenting...if I hold her one way for too long or too often...that area flares big time. My shoulders are giving me the biggest problems right now as they support all her weight when I carry her or burp her. i try really hard to alternate, but I'm using lots of heating pads at night to get through. I've always had trouble with repetitive movements and my fibro...whatever area of my body that is used over and over...flares in an unrelenting way.

As far as my exhaustion and the fibro, and the baby...it's hard to tell which came first...it's a chicken/egg scenario. I'm tired, but I'm not at the I can't get out of bed stage at this point which is good. Stress is also still a big trigger for my fibro...homelife has been less than peaceful as of late with our teenage son, and I definitely notice that major times of stress, cause my fms to flare...but all in all...I'm sooooo glad to be on the Savella.

I know that drugs affect everyone differently, and that this one can make you really nauseous...I had a bad two days, but that's all....I've heard of folks who have to stop the drug because it makes them so sick. If you haven't tried it, I would definitely recommend looking into it. It's made a world of difference in my life...I'm hoping that it will continue to do so. Cymbalta initially helped my pain a lot, but I found that that didn't last over time...so I'm keeping my fingers crossed.

I hope all of you are doing well...I've missed blogging a ton, and hope to keep a regular schedule of posts going now that I'm back online with my puter, and not just my cell phone

love you all!

hobbz

She's here!

2010-05-29T12:12:00.001-08:00

Our little bundle of joy is here....it's just taken me awhile to post....sorry.

Emma Kajo Carmichael was born at 0810 on May 10th, and was 6lbs 2oz, 19.5 inches long. She has been a wonderful addition to our family thus far.

May 10th is the date!

2010-05-03T16:10:00.001-08:00

I found out last week that I will be induced on May 10th, barring any jump in my blood pressure in the meantime. So the big day is almost upon us!

Only 6 more sleeps! I'm terrified and elated all in one, but doing my best to take it easy and keep my BP in check since my husband won't be home until Friday.

The nursery is set...and I have ambien to get me through the sleepless nights...lol...

I'll keep you all posted! I hope everyone is well and enjoying the spring like weather!

Hobbz

34 weeks...

2010-04-15T17:12:00.002-08:00

Well I've made it to 34 weeks which is good, but I have to say I'm struggling this week. I think the combination of hormones, being 8 and half months pregnant, and life are all ganging up on me, and I'm feeling rather overwhelmed. I have to go to the hospital 2 times a week to have the baby's heart rate monitored, and one of those times they will also measure the amount of amniotic fluid. Right now the heart rate monitoring is just due to my high risk status, and the monitoring of fluid is because i'm just on the verge of having too much, which can mean premature labor so they are just keeping an eye on things.

My hubby is working an extra week out of town to make some extra income for when he's off when the baby comes, and my 14 year old step son has been less than easy to deal with...so I'm feeling rather alone and scared right now. I know this is all normal for being at this point in the pregnancy, but it doesn't make it any easier to deal with...on top of all that one of the key supports in my life has dropped out of existance and refuses to contact me...so I'm feeling a little sorry for myself. I always thought people would ralley around when your pregnant, but the one person I thought would be there has disappeared. POOP!

Overall things aren't as dark as I feel like they are, and I'm trying to keep things in perspective. My friend that was 7 weeks ahead of me, and delivered last week went through all the same feelings and hormones...so I'm trying to keep a good perspective. That's important because we all know that when we stress and don't sleep...our FMS gets worse. Mine is starting to rear it's head so it's a good reminder to try and relax and take care of myself.

I'm so grateful for all of you out there who have stuck by me and supported me on my blog...even though my entries have been inconsistent lately...all of you are on my mind alot and I cherish this outlet and the support that I have.

Thanks to all my peeps!

hobbz

Remember me?

2010-03-15T05:50:00.002-08:00

Once again there has been a long pause between posts...what can I say?...family life has been hectic and time just seems to fly by without me even knowing it.

So I'll be 30 weeks along on Wednesday! Officially in the third trimester...which is both exciting and terrifying all in one. I've developed gestational diabetes so as of last week I'm on a diabetic diet and testing my blood sugar 4 times a day...sigh. My doc finally put me on some medication for the nausea and vomiting, I've been taking it for 2 weeks now and I'm starting to feel a little more human...at one point I'd lost a total of 30lbs, but now I'm starting to slowly gain a little bit of weight as the baby grows. She's kicking and squirming all the time now, which makes all the yucky symptoms I've had worth it.

My fibro is still cooperating nicely, but I'll continue to keep my fingers crossed. I have some pain, but nothing major. I have had a couple whomping migraines though, which I could have done without. lol

Really that's all I have to report. It's been a long 6 months of running to the bathroom to be sick, and I'm so glad that the end is in sight....I'll try to check in more often though.

Hobbz

We've passed the halfway mark!!!!!!!!

2010-01-17T13:50:00.002-09:00

So I'm 21 and a half weeks....the halfway point has finally been passed! Now it kind of feels like I'm getting somewhere :-) nine months is a loooong time.

Since my last post we had our amniocentesis and all the chromosomes are perfect...insert sigh of relief here...We also had our 20 wk ultrasound and our little baby girl is just over 12 oz and was all curled up in a ball. It was quite cute, we even got to see her yawn. So far she's right on track and everything looks to be normal and healthy.

My health has been up and down. Luckily I'm having more ups than downs right now tho. Some days I feel pretty good and others I spend most of the day in the bathroom, so I don't plan too far in advance. It's weird but for some reason the more I move around the more sick to my stomach I get, which doesn't make getting out of the house much fun. My husband is a saint...he's started driving out of the way routes to places so that he'll be able to pull over at a moment's notice for me to hang my head out the door and hurl...what a lucky guy huh? lol

The holidays were quiet...just me and my hubby at home...and we're getting back into the swing of things in this new year that is going to totally change our lives forever :) My Fibro has been pretty non-existent throughout the pregnancy, in this second trimester I'm having more pain than before, but nothing like my pre-pregnancy pain. It will suck when it all comes rushing back, but I'm greatful that I'm not battling morning sickness AND fms pain at the same time.

My tummy feels like it's expanding exponentially everyday...yikes...those last couple of months are going to be a might uncomfortable...I can tell already. We've come up with a name...but of course we're second guessing ourselves now...so who knows what we'll end up with...either way it will be a secret until she's born.

All in all things are going well. Thanks for all the support folks! I love u all!

May the new year bring you happiness and joy!!!!!!!!!!!!!

hobbz

What a month!

2009-12-14T06:58:00.002-09:00

Whew hopefully the worst is over. As you've noticed, I'm sure, I've been off line for awhile. It's been a month of non-stop morning sickness (I've lost more than 20lbs), a threatened miscarriage, which led to several weeks bedrest....but finally I've come out on the other side only a little more bored than usual. :)

Yes the morning sickness has officially kicked my butt. I got to the point where absolutely nothing I ate would stay down. I have to say at this point that I just took yet another 5 min break to toss my cookies...ack...I thought it was getting better anyways...Actually in all honesty it's a million times better than it was, but the whole process was not a pleasant one.

As for the rest, I started bleeding the weekend before Thanksgiving and went through several hours of terror in the ER, before finding out that the baby was doing ok. A small portion of my placenta tore away from the uterine wall which of course caused me to bleed profusely. Apparently this isn't too uncommon and all bleeding had stopped completely within a few days, but I was on bedrest for a few weeks just to be safe. We had our amniocentesis on Thursday and the baby looked really healthy and is growing like a weed! A whole 5oz at 16weeks. We also ended up finding out that we are having a girl! Very exciting stuff!

So now this week I'm slowly starting to resume normal activities and we'll see how that turns out. While it's been the month from hell, the end result will be way more than worth it! Thanks to all who have provided their love and support through this difficult time, it means more to Bret and I than we can ever say in words!

Love you all and happy holidays!

hobbz

Life keeps trucking along

2009-10-30T15:21:00.002-08:00

Things have pretty much been status quo since my last post. I am now 10weeks and 2days along in my pregnancy, and still playing the role of pukey the clown...sigh. I've been sleeping alot lately too. I don't sleep more than about 3 hours at a time so it feels like I'm in a perpetual state of napping; which isn't necessarily all that bad. Naps should be mandatory in my opinion anyways so it's all good.

I've been eating tons healthier which helps me feel better too. Who knew? Fruit and frozen fruit are about the only things that seem appealing these days, so I'm just going with it. Eat what I can, when I can, that seems to be the mantra for the first trimester.

My husband has been out of town working for the last 2 weeks and finally gets home tonight. Life is so much easier when he's on his 2 weeks home...it's nice to not have to take care of EVERYTHING all by myself. Our 14 yr old son has decided that school and telling the truth are for the birds, which makes our home life less than relaxing. It's been a battle every night just to find out what is for homework and get it done. So far today we've been through about 15 million lies before getting down to the truth, by contacting his teacher directly. Can you say STRESS? and what does stress equal? fibro pain! yikes....the trials and tribulations of everyday life lol.

So life just keeps on trucking along, and all in all my health is in a pretty ok spot right now (crossing fingers, toes, arms, and legs now). It's all in the perspective that one keeps, how simple yet so profound. So here's me pregnant, with a hormone raging teen, and fibromyalgia.....lol

hobbz

OK so it's been forever....

2009-10-16T23:51:00.002-08:00

I know it's been forever since I've blogged...but hey...life just kind of gets in the way sometimes.

The cool news is that we are pregnant!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Very excited I'm 8 weeks and 3 days as of this post. The not so fun news is that I've spent the last 2.5 weeks puking my guts out. I'm trying to keep a positive perspective that that means the baby is healthy and growing, but puking gets old. There's nothing I hate more in the world, not that I know too many people that like it...but you know what I mean.

We found out super early, Like 2 weeks in, so I've been adjusting my meds, which has been a crazy adventure in and of itself. When I first found out that I was pregnant, my family doctor told me to stop my tramodol completely. Horrible, let me repeat horrible idea to go from 4-6 pills a day for the last 5 years down to nothing. I went through MAJOR withdrawal, it was ugly. So with the help of my O.B. doc and my family doc they have me down to 3 a day. Which by no means takes care of my pain, but I'm still able to function. Anything less and I'm a mess, i don't sleep, eat, think, function in any viable way. I also cut out my restless leg meds (mirapex) which makes sleeping challenging at the best of times. But it will all be worth it in the end....but it will be a long journey to make it to the end of May 2010.

I'm super jazzed and really haven't noticed that my fibro has been any better/worse than normal while being pregnant...granted it's still early. I'll be 40 in 3 weeks so I'm already high risk so I suspect at some point I'll end up on bed rest too. I'm trying to prepare myself for the worst and hope for the best. Only time will tell.

I've realized more than ever, how grateful I am for the amazing support of my husband...he has been soooo cool at trying to help me whatever I need. I'm not sure what I'd do without him. He went back to work this morning so it will be 2 weeks with just me and my son, and I have to admit I'm kinda nervous. Not that I can't do it, but it's really nice to have that extra support around. Although my son was awesome today at the grocery store...he new I was really nauseous and he helped with everything that he could...I guess he takes after his dad :)

This is my first pregnancy, my "son" is actually my step-son...so I'll just have to ride the wave and go wherever my body and hormones take me...but so far...things are good.

I'll keep you posted
hobbz

Roller coaster ride

2009-09-20T20:53:00.002-08:00

So life has been like a roller coaster ride lately. Lots of ups and downs, (I never have liked those things lol). The fam and I came down with the Swine Flu so that put me out of commission for 8-10 days....very tired and bad headache are all I can say. Luckily however we've recovered and life is moving on.

I've been in and out of flares lately and cutting back on my meds has really made sleeping difficult. My legs are either in a ton of pain or the restless leg thing is driving me crazy. I haven't found anything that helps my jumpy legs other than medicine so it's been a long month. My family doc was telling me about the new drug Savella (sp?). She says that she has switched alot of her fibro patients over to it, with stunning results, some are even hiking and jogging daily!!!!! Can you believe that? My husband just about fell off his chair when she said that. So right now while we're trying to get pregnant, isn't the time to start a new drug, but hopefully by this time next year I'll be able to give it a whirl.

Does anyone out there have any experience with Savella, I really haven't had much time to do any research on it, but I'll keep you posted as I do.

Sadly this is just a short post as I really need to head to bed, but I wanted to check in and let folks know I'm still alive. I'll try to post more in the next week or so, I've just been so busy sleeping lately I haven't had much motivation to chat. Sad huh.....lol

hobbz

:)

2009-08-12T20:16:00.002-08:00

So my positive attitude is still intact, but I'm in a bit of a flare. It's been 4 or 5 days since I've had more than a couple of hours of sleep and my back is on fire. Reality bites. lol

The good thing is that I knew this is coming...and just as it snuck up on me....it too will sneak away again for a break. I'm learning to ride the waves of this disease, and while this valley isn't any fun...I've come to learn how to take care of myself and ride the wave back up to the top.

Right now my son and husband are both out of town...but as of Sunday they will both be back...hopefully I'll be able to keep focusing on taking care of myself with the fam back at home. It's hard to feel like I'm taking away from them to take care of me...but I've recently accepted the fact (in my heart, not just my head), that I'm off no use to either of them if I can't take care of myself.....so wish me luck.

hobbz

A change of perspective....

2009-07-30T22:47:00.002-08:00

Once again it's been awhile since my last post. I've been, one, enjoying the amazing summer weather we've had this year! It is truly amazing to live in a place as beautiful as Alaska in the summer time. Two, I've been doing alot of self discovery and work on my self image. Actually I think I've actually made some significant headway in this area.

I will be 40 in November and I'm starting to think I'm going through some sort of mid-life crisis, but in a good way...definitely not bad. I've really started to come into my own over the past 3 or 4 months, and it's feeling really amazing! I'm coming to grips with issues that have mired me down for as long as I can remember, and it's lifted an amazing weight off my shoulders.

As far as my fibro is concerned, it is as normal, ever fluctuating. I have a great week and then it's followed by two weeks of pain and fatigue like no other. The thing is though, that I've started to see that I don't have to be defined by my inability to do things. Don't get me wrong, I still get pinnacly frustrated when my body doesn't co-operate, but I've started being easier on myself about it. I still am mourning the loss of my "old" self, but somehow it doesn't seem quite so overwhelming as it has in the past. This my friends is major progress for me, and I'm pretty darn proud of myself! Yea me!

I've joined a gym and have been attending pretty regularly. Of course at first I had huge plans to go everyday and become skinny and buff in no time at all....(duh...will I ever learn? lol). However I'm slowly, ever so slowly learning to give myself a break and go to the gym when it's going to be helpful and not detrimental to my body and well being. I'm still at the point where my body rebels to some extent after a workout, but I am also far enough along into the process that I'm also starting to feel a little bit more energized after each venture into the gym. So I'll keep slugging away and get to my goals when I get there. I have to be careful to not compare the "old" me to the "new" me, and focus on the positives that I'm gaining. Overall however I'm very happy with my progress and new found focus.

I'm so excited to feel like I'm finally climbing out of the hole, that represents all the losses I feel surrounding this stupid disease. I'm to a point where I'm ok with me as I am. My weight is way higher than I'd like, but there is good reason for that and I'm working on it. I can't work the hours or at the intensity that I used to, but now I've found hobbies that are relaxing and fill me up instead of take away from me. I can't hike all the trails I'd like to, but I can spend a day fishing with my husband and be supported for the next two days while I recover. Right now it's pretty good to be me...fibro and all.

Without this disease I don't know if I would have gotten to this realization, I do know that it would have taken me alot longer to get to this point without the fms. I'm happy to be me, and I really don't care what others think. My fibro tattoo has really allowed me to spread awareness to others, and that is so rewarding! I have a new set of friends here in Alaska that I have opened up to, and they understand and support me with the fibro...it's so cool to have somebody phone just to see how I'm feeling today. I've spent the last 4 years worried about hiding my disease for fear of judgement and now I feel totally empowered to be me...fibro and all...and to not worry about anyone else's opinion. My new motto is "it's none of my business what you think of me"

As long as I'm living my life to the fullest I'm doing good. This disease has challenged me to do this, and now I accept the challenge as opposed to resent it. This is a subtle change in thought....but a huge leap of faith and attitude.

THANKS TO ALL WHO HAVE SUPPORTED ME THUS FAR! You know who you are and I'll continue to lean on you...but maybe now, I can be happier and more comfortable with me and my situation.

My name is Jan...and I have Fibromyalgia....so what!

hobbz

Coming to grips with a chronic illness

2009-06-16T20:25:00.004-08:00

As some of you I'm sure have noticed that over the last year or so I really am having a seemingly impossible time coming to terms with my illness. It's ever changing and constantly reminding me of it's evil presence in my life...I like this excerpt that I read today...

" The sad reality is that living with fibromyalgia is, itself, stressful. The early period just after diagnosis is the toughest because you have so much to learn and deal with. But the stress doesn't end there. You have an illness that changes from day to day, and things need to get done in a world that doesn't slow down when you can't walk very fast. Learning to accept and manage as much stress as possible will help you in your recovery process.
Stress is often defined as a perceived inability to deal with a difficult situation. Yet stress is also the body's reaction to change, which means that it can be a catalyst for new thing and new behaviors. The challenge can be physical or mental - the definition is purposely broad. And, because each of us has our own perception of what a difficult situation is, what triggers stress is different for all of us.
It's hard to separate fibromyalgia from stress. It's stressful to be in pain, worse to have unpredictable symptoms... In fibromyalgics, chronic pain is the number one source of stress. That doesn't even take into consideration the stressfulness of the fact that you have had a complete change in your life from your fibromyalgia. It's even more stressful to have cognitive problems and push yourself through fatigue. Add to this the normal fibromyalgia symptom of anxiety and nervousness and you can see the problem. Even without any added stress you're using up a lot of energy that you can't spare. Here's what you should know: Stress is in the body and the mind. It makes us feel anxious, short-tempered, and overwhelmed. It's a vicious cycle that makes every single symptom we have worse."

---pg 123 "The First Year - Fibromyalgia" by Claudia Craig Marek

I think this reading makes several good points...it's kind of like which came first the chicken or the egg? In this case it's which came first today, the stress or the fibro? It's an ever changing circular dance between the two. I seem to constantly beat myself up for feeling "anxious, short-tempered, and overwhelmed" as the author wrote...I didn't see these "defects" as linked to my chronic condition/situation. I keep feeling like I've always been able to handle these situations before, why now is it so hard? What's wrong with me? and that's a shitty attitude to have!

Part of my struggle is that a huge part of my heart doesn't want to come to terms with this illness...it's unacceptable and how does one go about making the unacceptable...acceptable? I know that in order to pull off that miracle, my attitude is going to have to change dramatically. Talk about being anxious and overwhelmed.

I'm clearly my own worst enemy. I try to pretend that all is ok to the outside world and that is problem number one. I have to accept the situation that I'm in and make sure that others that are involved with me know that. I fear so much for burdening those around me, especially my friends and family. I know how hard it is for my son and husband...and I feel terrible guilt about it...I don't want to spread that dysfunction to others. sigh

I've got to get out of my head and put it out there. I've taken good steps at work and set some major boundaries in terms of how much I'll take on and how many hours I can realistically work, and low and behold...the earth is still spinning....who'd have thunk it? lol

The hard part now is being more vocal in other parts of my life. I don't bring up my fibro hardly ever...the only time I talk about it is when someone else brings the topic up. I don't want people to think I'm whining...on the flip side is that if I hold it all in, I end up whining on here or to my husband, which is NOT ok to continue....

Oop ack ick...where to go from here....the struggle continues...ponder ponder ponder.....

hobbz

National Fibromyalgia Association: Adjust Your Anger Management Style--Reduce Your Pain

2009-05-30T15:36:00.001-08:00

National Fibromyalgia Association: Adjust Your Anger Management Style--Reduce Your Pain

I'm posting this link to an article about how suppressing your anger can lead to not only more fibro pain, but also increased anger....

This article really jumped out at me because I've somewhat subconsciously noticed that my anger has definitely intensified over the last few years. I used to be the most patient person in the world and now I find I live with alot of unresolved anger. Things that would have never bothered me before...can now insight me to great rage. I never really wanted to admit this to myself let alone to the world at large, but it's been a nagging thought in the back of my brain.

Has anyone else experienced this? What do you think of the article? I'd be very excited to hear the perspective of others on this topic

hobbz

Malcontent

2009-05-26T14:07:00.002-08:00

I'm in a flare from hell, which has me honestly raging against this fricking disease! I try so hard to keep perspective, but right now my only thought is how exhausted I am from hurting and exhaustion...lol. I am barely sleeping at all and my legs feel like they are both being crushed AND are in a meat grinder, not to mention my neck and shoulder are hideously painful.

Sometimes I just want it all to go away! How does one keep perspective during a flare???? I just don't know. I know that it will pass at some point, but I'm tired of being 39 and alternating days between using a cane to keep my legs in check and not using the cane because my shoulder is killing me. I hate it I hate it I hate it!

But what can I do, but rant and rave, then suck it up and keep moving. Which I'm going to do, but really i have no choice here. And maybe that's what pisses me off the most. The fact that I have no control in what this disease is going to do, or when it's going to strike. I know there are folks that are much worse off than me, but right now I'm too marred in self-pity to care. yikes there's a statement!

so here I sit....frustrated and angry...and exhausted, and in pain...and fighting to not give up hope.

chronic pain and illness is constantly there no matter what....how does one finally come to terms with that? I go through periods where I think I've accepted my situation and I've laid all these feelings to rest. Maybe that is the problem....I expect to be able to lay it to rest, and not feel crappy about it anymore. Looking at that in type, it dawns on me that my expectations are warped...go figure. I need to find a way to accept that things WILL indeed suck in times of flares/pain/exhaustion....I'm just not sure how to do that just yet.

i'll keep you posted on that one.

hobbz

must sleep

2009-05-21T04:18:00.002-08:00

So, it's 4 a.m. and I still haven't fallen asleep. ACK. My body will not sleep and is wracking my muscles with pain! I also suffer from restless legs syndrome, but tonight has been like my whole body can't stay still. I feel like I'm going frickin crazy!!!!!!!! I've tried breathing, reading, listening to music, listening to gregorian chants, hot shower, more breathing, flipping and flopping...and now I'm surfing the net.

God I hate this disease!!!!!!!!

Tomorrow is going to suck! eeerrrrr that is to say today is going to suck...since my son gets up at 6 a.m.....wish me luck

hobbz

My week off has come and gone already...sigh

2009-05-19T22:01:00.003-08:00

My week off was truly wonderful!!!!!! The days seem to just fly by when you don't have to work. I felt like I accomplished alot, but I did pay for it some, and spent the following week using a cane. The culprit was pruning those damn lilac bushes...it sent my back and hip over the edge. I know my neighbors must think I'm crazy, with the sporadic bouts with a cane. "does she use a cane or not????" lol

As usual I was very aware of how much better I feel when I'm not working. I took half the pain meds I normally do, and I felt like I could rest when necessary and still have time for all the house stuff. It sends me right back into the dilemma of to why am I working? Outside of needing to support myself of course *grin*

I go thru this debate about every six months...and I just don't think there is a "right" answer on this one. So for right now I'm just continuing on as I have been and hoping that if the time comes where I need to quit...we will be in a financial situation that would make that feasible. My husband is so incredibly supportive of me no matter what and that really helps. My job flexibility is key too. If I didn't have the opportunity to work from home when I need to, I wouldn't be able to work at all...so really right now I guess I have the best of both worlds...hmmm never satisfied???? I don't know.

So the weather is still amazing and I've been able to hang up my cane for the time being so I've tried to continue to walk and keep working at moving, without overdoing it. Progress? you ask??? just maybe.....lol

hobbz

Spring has finally arrived

2009-05-04T04:05:00.002-08:00

Spring has definitely sprung, here in Anchorage, Alaska... and that makes it just a little more difficult to focus on blogging. At least that's my story and I'm sticking to it. We are gaining more and more light by the day and it makes such a huge difference on how I feel. Not to mention the fact that it's amazing to be able to get out into the sunshine and be outside.

In terms of the fibro...life is so-so at this point. It's 4a.m. and I've yet to fall asleep tonight, and that is pretty much par for the course for my last couple of weeks. I got all ambitious yesterday and pruned a whole 2 bushes and now is my body ever feeling it. My back is a mess and my neck and shoulders are so tight I've developed one whopping headache. I have to say that it's waaaay frustrating that such a simple task takes such a huge toll on the body.

I have this whole week off from work and my plan is to focus specifically on my physical and mental health. I'm going to start walking daily and try to lose some of these nagging pounds that are weighing me down, I'm going to check in at our local YMCA as well and maybe try some swimming since it's non-weight bearing I'm hoping it will help me not feel quite so much pain after working out.

My focus of late has very much been on self improvement, which I think is why I've shied away from blogging. I've been doing a lot of work around improving my self image and defining who I am, separate from being a wife, mother, employee, etc. This has proven to be a challenging journey, as I've found that I really don't like myself all that much. In turn I tend to beat myself up for not living up to my unrealistic expectations. Obviously being a fibromite this doesn't work in my favor...sooooo....I'm taking the steps necessary to change my old thinking patterns and I'm trying to replace them with healthy realistic tapes to play in my head.

I've spent a huge amount of time looking at what fms takes away from my life...I'm really at a point where I'd like to live life within my limitations, IN SPITE OF MY fms. Wow what a concept that is? I've always hoped, (when going thru difficult times) that this time I'll get it, and then I'll be done with self-discovery, and self-improvement. Reality is, however, that this life is a journey and I need to understand that I'll never just get "it" and be done...I'll always be in a state of flux and that's ok. It doesn't make me flawed, it just makes me human.

So my flawed self and I are trying to branch out and try new things. I've used my fibro as an excuse to hide from new things and experiencing life for too many months now. As long as I work within my bodies limitations I should be able to try and do all the things I've always loved and wanted to do. Just because I can't do a several day hiking/camping trip...doesn't mean I can't do easy hikes in town or short hikes close to town until my body builds up some stamina. My doctor has advised me that initially when a fibromite starts doing physical things the pain and punishment afterwards is quite bad, but, ...IF one can get past that period, the physical activities actually improve the pain and fatigue that accompany us day to day. So I'm going to give it a try and see how it works. I have a week to recover from any pain that I may inflict upon myself, right? lol

The key for me is to go slow and build up to things. I have a tendency to jump out there and try to do what I used to be able to do, and then get discouraged when that doesn't work. (notice I didn't use the word "fail") lol. So "baby steps" is the motto for this week. I'll keep you posted on how it goes.

It all needs to begin, however with some sleep! So I'm off to stare at the ceiling some more and see if I can't get a few winks before my son is up and getting ready for school.

I love you all!!!!!!!!!!!!!!

hobbz

Ups and Downs

2009-03-29T18:24:00.002-08:00

It's definitely been a week of ups and downs. My FMS has kinda settled down since my last post, but now I'm preparing to throw it into flux again..."preparing" u ask? Voluntarily you ask? Why? Well my husband and I have decided to try and get pregnant. Part of that, means weaning off some of my meds., the ones i'm most scared of not having is my pain meds. Ack! I'm not quite sure how to get thru a year with no pain meds. Has anyone else out there been in this situation? What did you do? I would greatly appreciate any input that you may have to offer.

Gladly though, other than being more tired than usual, my symptoms seem to be in a relatively goods spot right now. I of course, hesitate to write that for fear that I've now just jinxed myself...lol

I hope all is well with everyone out there and appreciate any advice/experience you might have to offer with regards to pregnancy, fms, and medication.

hobbz

It's the weekend!!!!!!!

2009-03-21T23:05:00.003-08:00

So it's the weekend, and I promised to write...did anyone notice it's a week late? lol probably not. In all honesty it's been a week from hell and my body is waging a revolution in response to it. Such is life though.

In recent months I've come to realize that the whole idea of going it in the world alone, is waaay over rated....ok you can stop laughing now....no really....stop....I'm serious. All my life I've preached the virtues of existing in this universe in a truly solo adventure. I've never been a big fan of religion (under statement of all time), and have believed that Those who rely on an outside force for peace and serenity are somehow weak or "less than"....

Well alert the media folks....Hobbz is officially declaring that I just might have been wrong in this viewpoint. Yikes. *insert slap to the forehead with a 2x4 here*

In the last few years I've been on a personal journey of sorts that was somewhat egged on by my diagnosis of fibromyalgia...but in fact was in no way related to it. (I'm really struggling with how to word all this so bare with me on this one). I've come to accept the fact that there is a power that is much greater than myself at work out there. I don't know what it is....and don't frankly care for the word "god", but the beauty of it is...that I can define that force any way I choose and it doesn't affect anyone else one bit. This all came to light for me this week, and I was able to see quite clearly what happens when I lose this focus, when I suddenly found myself in a familiar, all be it old family crisis pattern, that I thought I had "conquered" for lack of a better word.

One thing that those of us with chronic conditions learn quite quickly is that when we fail to take care of our own needs first, and put ourselves in situations that are straining and difficult, we pay quite dearly for these actions. My fibro doesn't care what's going on outside my body, it simply rears it's evil head in response to the actions I choose to drag my body/mind through. I thought I had a pretty good handle on this concept until this week. When I was thrust into this old crisis situation, I worked really hard at focusing on what was healthy for me and did pretty good....initially. Somewhere along the way however, I lapsed into the insanity of old, and forgot that I DO indeed have choices on where I journey in spirit and mind.

It took a very dear person to bring me back to reality and show me that regardless of the chaos that may exist around me, beside me, on top of me, or just in my general vicinity...I have the ability to STILL put me FIRST....and not only do I have that ability but I have an obligation to myself and my immediate family to keep this perspective forefront in my mind.

I no longer have to fix the crisis, or live with the crisis or even worry about the crisis. I have this amazing force of love and acceptance around me 24/7 that lets me know I'm not alone even when I make stupid decisions or choices. There's a great deal of comfort in not just knowing that, but actually feeling it!

For those that know me in the real world this will probably sound very strange coming from me. Heck I think it's bizarre that I am even acknowledging these revelations to the outside world....but fact is...it's made a huge difference in how I live day by day with fibromyalgia. This disease will suck me dry if I don't learn to put down all these things I thought I had to be responsible for, and just for once...start being responsible for my own health and well being.

I will never be a religious person, but I've always considered myself to be quite spiritual. I'm glad that fibromyalgia pushed me in the direction of finding a power greater than myself that supports me and loves me unconditionally. I've never had that before, and it's getting me through this week from hell. Has the family situation changed? Not one bit...in fact the crap continues, but it doesn't matter. I have a loving husband, and son, and extended family that supported me all the way. More importantly though I had myself and that extra force to guide me through the darkest moments.

So as I sit here, dead dog tired, aching from head to toe (i even think my hair hurts today)...I once would have been quite miserable...but I know that while this moment sucks...the next might not...but even if it does I'm not alone....even when nobody is physically here...I'm not alone.

wow what a weight that has been lifted from my shoulders.

(i don't know if any of this makes any sense to anyone but me, because I'm in a fog and just rambling.....but hey I put it out there...so take what you liked and leave the rest)

may this find you all well and feeling loved!

hobbz

Wow back from a break

2009-03-13T00:15:00.003-08:00

I've just spent the last couple of weeks relaxing and doing absolutely nothing :) Which is also why I haven't posted anything. It's been spring break for the school kids and our son went to visit the lower 48 so it's been just my husband and I. At one point we were thinking of going to Hawaii, then it was maybe travel in-state, which moved quickly to living it up large here in Anchorage. In reality we hung out at home, read, played video games, and relaxed. It's surprising how fun, doing nothing can be.

So I'm all rested up and will post more later. I just wanted to check in and let everyone know I'm still here. I'll write something more this weekend

until then....

I'm just not sure....

2009-02-14T23:41:00.004-09:00

I'm just not sure where the time goes lately. It just flies by and before I know it, it's been a month since my last post. Health wise I've been in a TON of pain lately, thanks to the fms...but otherwise my symptoms have been reasonably mild. I find it soooo interesting to see the difference between how I feel with only one main symptom and how I feel with full blown symptoms. It makes a world of difference, which sounds sad I'm sure to normals...but it makes perfect sense to my fibro mind. I never in my life thought I would consider it a good day, when my only problem is constant mind numbing pain in my body. lol

The worlds we live in are so complex and the things we can get used to and adapt to are amazing. It's times like these that I need to remember when I'm feeling beaten up by life and my fibro.

Lately the prevailing thought for me has been the struggle to define my illness as an "ok" thing in my life....or I guess in other words find acceptance. It seems just when I hit a comfort level with the hand I've been dealt something else comes along and I feel anger, blame, guilt etc all over again. The most recent incident was while talking with my husband about what behaviors we'd like to see the other one work on...particularly around anger. whoa does that sound as intense as it seems? Actually the conversation was a reasonably light one...but anyways, I digress. I brought up my issues/concerns and then his response was something like " anything that I would like to see changed can't be because your sick. Some things are unfair so I'm prepared to take my unfair share of problems...." When I questioned him further for clarification, the gist of what he was saying seemed to be that when I'm feeling crappy I'm blunt, curt, short with people, angry....because I'm in pain/exhausted...etc. He feels that since we can't get rid of my illness he is just stuck with this consequence. This makes me incredibly sad! One, I'm still accountable for my behavior healthy or not, but two, to hear him feeling as helpless as I do sometimes, makes me feel like I've burdened my family unnecessarily.

I don't want it to sound like he hates being with me or that he feels obligated, because that certainly isn't the case...but how can I make that up to him? Obviously I need to find a way to circumvent the cranky behavior when I'm feeling like shit...but that too brings up a whole can of worms. My first thought is that as soon as I start feeling pain or fatigue or overwhelmed by sound/pain/fatigue/smells/(you get the picture) I need to remove myself from the situation so that my family doesn't have to suffer as well. But then I'm terrified I'll be locked in my room 24/7 and will never be with my family. This brings up a whole lot of fears for me and obviously my husband. We've agreed to come back to the topic when he gets back from work...and I know we'll figure something out...but the guilt that I feel is still ever present.

It's totally unfair that I've gotten this disease, but life is unfair...I can cope with that (most days anyways)...but the fact that it's just as hard on my family, kills me. They see me suffering and just want to help....but they have no more control over this than I do. It's good to remember that this disease is a family affair. It can't just touch one person and leave everyone else alone. That's a pretty sobering thought.

I see how widespreading this disease is when it comes to dealing with various family members and friends. One I don't like bringing it up alot because I don't want to burden others, or sound like I'm whining or making excuses. On the other hand I really get the feeling that the whole subject makes people uncomfortable, so I try to pick and choose the times I discuss my illness with those close to me. Unfortunately my husband and son don't have that luxury. They see firbromyalgia in all it's glory. I can't hide it from them like I can everyone else. I can't paste on a smile and say everything's fine when it isn't. Anyone who has spent significant time in our house since my diagnosis, has gotten a glimpse of what life is like for the 3 of us, but reality is...only we know, what it's truly like to exist with this illness 24/7...for better or for worse, that's just the way it is.

Sometimes, I feel blessed to have discovered how important self care is, because my fibro doesn't ever give me a break. I've learned my limitations and when to say no, for my body's sake. If I over do something...fibro strikes with a vengeance....but I can weigh those risks and decide if a given situation is worth it, for me. How do I weigh the same risks when it comes to my spouse or child? Wow that's not so easy.

I'm blessed to have married my soul-mate and I'm secure in our relationship and his presence here in my life...but man I hate to see my fibro affect him in such a shitty way. Ouch. I guess my lesson for today is "powerlessness" if that's a word......

hmm....thinks that make you go hmmmm.....

hobbz

finally recovered from the flu...

2009-01-26T15:23:00.002-09:00

So since my last post I spent about 3 weeks with the flu from Hell! Ick. Hence I've been rather lax with my blogging on all fronts. I still have a cough but the fever, aches and general exhaustion seem to have left the body. So I'm back!

Thanks to ALL who left the awesome comments on my last entry. I've since then gained some perspective on the situation. I had already come to the conclusion that surgery is too extreme for me at this point...but all your points are totally valid, and well received. I've finished my trial of Mirapax to help with the restless legs and I'm elated to report that I think it's making a big difference in my sleep. I actually wake up because I've been in the same position too long,and that is unheard of for me! Usually I travel all over the bed and beat up my husband in the process. Now that I'm over the flu, I'm also noticing that I'm not as exhausted all the time. It's hard to tell though if that's just the ebb and flow of the fibro or that there is a difference with taking the meds. So we'll see how I feel in a couple of months.

I feel like I have a better perspective on things at this point and I know that part of that is not being so damn exhausted all the time. It makes life seem so much more livable when you have energy. I know that sounds totally idiotic, but it really is true, and when you are living in constant pain and exhaustion your reality becomes about the negatives and what you don't have, or can't do. Once some of the pain and tiredness go away...life looks completely different. No wonder I take drugs for depression....lol....I'm all over the map, as evidenced by my blogging. :)

What I know at this point is that I've started eating better and I'm more alert and able to function better mentally. Physically I'm trying to get moving more, but no major progress in that area yet. It's on my radar though and I hope to get into a schedule over the next couple of weeks that improves my exercise. I have to pace myself or I know my body will wage a revolution of biblical proportions and I'll fall flat on my face....wish me luck.

I hope everyone out there is feeling OK and that you all are able to have a modicum of joy in your life each day.

take good care!

hobbz

still searching for peace with fms

2008-12-29T19:50:00.002-09:00

I haven't blogged much lately as I'm feeling pretty discouraged and I don't want this blog to just be about complaining, which seems to be all I'm doing lately. This disease is just so damn frustrating, and I'm really struggling with it right now.

A few months ago I had approached my doctor about getting some help with weight loss and her suggestion was for me to have a sleep study so we could find a way to improve my fatigue level, which in turn would help me be able to do more physically. Well I finally had that study this past weekend. It was what seemed like a very long night for me and I was thinking that they were going to ask me to come back again because I didn't sleep enough to get an accurate study. So the big surprise was that when I met with the doctor the next morning she said I actually slept like 94% of the night! Yikes! I don't know how to explain this and she looked at me like I was nuts...but I'm in a constant state of half awake half asleep. I can tell you all about them clearing the roads outside during the night, about the tech chatting on the phone in the next room, about how the tech was hooking up a cpap to the other patient next door...how my back was hurting so I tried to sleep on my side, but my legs hurt so I switched to the other side...how my mind wouldn't stop running so I just said the serenity prayer over and over and over again in my head. I was soooo exhausted after the study I was falling asleep waiting for the doctor...I went home and slept for 4 hours that afternoon and then went to bed at 7:30 pm and slept until 9:00 the next morning. So I ask you? how do their readings show that I slept normally???? It doesn't make sense. Oh and the other thing...they also diagnosed me with a new condition...PLMD "periodic limb movement disorder" which is basically like a milder form of restless legs syndrome and with that new diagnosis of course, comes yet another medication.

I'm feeling pretty dejected and lost at this point. What do you say when for the most part the test was normal and I'm almost asleep on my feet? I have another appt. with my family doc next monday to discuss this and by then hopefully the meds will kick in and help me not be disrupted by my legs jumping around all night. Hopefully! I'm to the point that I'm very seriously considering weight loss surgery. I'm on meds for reflux and high BP and I can't seem to get my weight down because i'm in so much pain...maybe if I could get surgery and get my weight down that would help with getting off at least 2 of my meds and getting moving a little easier and with less pain. I just don't know...but i'll talk to my doc about it all.

So while this post isn't a rant it certainly isn't all that positive either, but reality is that this IS my life with fibromyalgia, and until I can find some better alternatives to improve my health I'll have to find a way to make my peace with it...

still searching for peace....

hobbz

more of the same

2008-11-29T15:25:00.002-09:00

My last post was a vent in frustration, so now today I feel like I should have something prophetic to say....hmmm....errr.....um.....yah.....so, nothing is coming. Work has been good, but I've had to spend alot of time at the hospital so it's not the same as working "from home". My health fibro wise has been sporadic. I'm really fighting some hellish stiffness and pain in my neck. I went to see the surgeon and he said it's par for the course and it's probably just because I'm doing more and more. But seriously folks....I'm a slug! I haven't been doing anything I don't normally do. My husband's neck is pain free and he had the surgery the same time as me and had double the work done....what an evil doer he is! lol

I know everyone's different and heals at their own pace...but my neck didn't hurt before surgery...so why does it hurt now...lol....who knows. My shoulder doesn't hardly hurt at all tho, and that is WONDERBAR! so I guess I shouldn't complain....speaking of complaints, I've been reading alot about gratitude lately and how it helps the soul and body alike. So every night before I go to bed I go through the entire alphabet and come up with one thing I'm grateful for that starts with each letter....and go figure it actually works. Just like it's hard to cry and smile at the same time...it's hard to be bitter and grateful at the same time. Now obviously that's not a rocket science type of discovery, but sometimes I think my head misses the most obvious of things/concepts...so I thought I'd throw it out there for folks!

try the alphabet gratitude list each day, or start a gratitude journal and write down 3 things your grateful for each day....see how it works.

hobbz

back to routine

2008-11-13T13:53:00.002-09:00

This week and next I have to be at work everyday...at a minimum of 6 hours...and my body/health has gone dramatically downhill. I can't sleep, eat, I hurt everywhere, and I'm just generally frustrated and in a fog. It doesn't seem to matter how short a break I get, the minute I start to feel better (like working from home) I manage to trick myself into believing that I can handle a week of regular work. It's just one week and not necessarily even 8 hours a day. What a joke! Here I am on Thursday home, by 1pm and ready to die. I know I've said the same things over and over, but this just flat out sucks! I feel so incredibly useless, when I realize (for the millionth time)...that I'm a shell of my former self, and really the amount that I can contribute to the world, my family, and my life is a pitifully small amount. It's so defeating!

Maybe I should have a better attitude, but a part of me says "why"! Why? should I feel good about this, and paste a smile on my face when I feel like total ass? Is there a good reason out there? Not right now! People just don't seem to understand how devastating this disease is, and that's a huge part of my frustration. I try to vent or talk to someone and I either get the..."pull yourself up by your boot straps" reaction or I get the " you're so screwed you need to go to counselling" reaction. Surly there's some middle ground somewhere. Most days I handle it well, but weeks like this not only wear my body down, but my mind and inner strength suffer too. Can't I have a bad week and whine, without being condemned????

I know all the warm fuzzy counselling crap....simply put at this moment, I just don't give a "fork"! I'm out of spoons and they seem to be on back order, which means I'm screwed. Reality is I HAVE to go to work, and that means that I WILL feel like poo, and there's no amount of counselling or boot strap pulling that's going to fix it.

Obviously I'm feeling really defeated and down...I just feel like I'm in a no win situation. I know others are worse off for me, and on good days, I can focus on that and be happy...but right now I just want to curl up in a ball and expire.

sorry for the vent.

hobbz

A whole extra hour!

2008-11-01T22:40:00.002-08:00

This weekend is when we "fall back" and daylight savings time ends for another year. I love when we gain this extra hour, usually because it means one more hour of sleep. yippee! lol

Overall this week has gone pretty well, I'm still dead dog tired though. I was doing some reading this week on fms and how it affects sleep, and I found information on our circadian (know idea how to spell that) rhythm. It mentioned that people with fibro don't have a functioning rhythm in that aspect, which explains why my body is wide awake at 2 a.m., but I can't keep my eyes open at 10 a.m. I think I saw this on a message board somewhere. If I find it again I'll post it here as well, as it was very interesting.

I really don't have much to say today about fibro, which I'll take as a good sign lol and just leave this post at that.

take care all!

hobbz

Sleepless in Anchorage

2008-10-26T14:46:00.002-08:00

Wow, my fibro is in full blown flare up mode, luckily I'm entering week 3 of working from home and have been pretty much able to compensate for my body's lack of co-operation. I've been finding it next to impossible to sleep...the night just drags on and on without even a hint of sleep. Or the flip side is that I've "slept" (so to speak) through the night, but wake up even more exhausted than when I went to bed. It's a horrible cycle to be in and I hope it will end soon. The one bright light is that I know at some point it WILL end and I'll start getting some rest, but in the meantime, I have to really be careful to not over extend myself, while sleep is scarce.

I've definitely had lots of time to read and catch up on just "me" time, which I'm finding is more and more necessary. I've gone most of my life putting others first and me last, however that doesn't work so well with fibromyalgia. It's more important than ever to keep myself focused and centered so that I have the energy and strength to be there for my family and loved ones. I guess you can find a blessing within any dark cloud, huh.

It is still hard though, to feel so isolated when you're not around others who are struggling with the disease. Once I get into a routine with my working from home, I really want to start up a face to face support group for others suffering from FMS. I know it would make a huge difference for me, so I can only postulate that it would do the same for others. It seems as though, there is a huge gap in terms of lack of support for family members of those of us who suffer from fibro. They go through it all day to day with us, but find it equally as hard to get any face to face support from other family members dealing with the same issues. Maybe that can be something I look at when setting up a support grp. Maybe we have a family members group run concurrently so that it becomes a family healing process....I don't know yet, but those are some of the ideas I'm thinking of.

Obviously I have a lot of thinking time at night so I have to be careful to not bite off more than I can chew. I've requested some information online, for starting local support groups, and I assume it will outline some of these same concerns and how others have dealt with them. In the past I would have seen going to a support group as a sign of weakness (shaking my head as I type), but now I see it in the exact opposite light. I think it takes strong, courageous person to walk into a room of strangers, and say "I need help"...hopefully I'll find a way to create a safe and welcoming environment for people to do just that. Nobody, regardless of whether you suffer from a chronic illness or not, can survive in a bubble all their own. It's important to ask for help when you need it, AND to lean on others when you can't do it alone. Through the process of learning to live WITH and not in spite of my disease, I have come to rely on others in a way that is not always what I would want in my "ideal" world, But thank god I have two guys in my life that are there for me day and night no matter what I need to help me. I'm not sure what I would do without them!

until next time...
hobbz

I'm still here

2008-10-16T12:51:00.002-08:00

It has definitely been awhile since my last post. I'm almost through my first official week of working from home, and I can see the difference already. Monday I spent the entire day at home and felt great. Wednesday I had meetings all day and was at work for over 5 hours....I was exhausted, it was back to how I felt daily going to work and slogging it out. I'm so thankful that today, I was able to get up with my son and do a couple hours of work before taking him to school. The beautiful part was that when I got home from dropping him off, and my legs were killing me and I was drop dead tired, I simply went back to bed. Wow, what a concept. I slept for a few hours and then got up and did some work. It's all at my leisure and while my body is cooperating. Obviously I can't get out of set meetings, but most days won't be 5 hours long like yesterday. I am so incredibly thankful for this opportunity.

Other than that, I've noticed the last couple of weeks that my mind has been enveloped by the "fibro fog", and I absolutely hate it. It's like I'm 4 steps behind everyone else, and it makes me feel so dumb. I play an online computer game where we talk with each other on headsets...my fog got so bad a couple of nights that the group I was playing with insisted that I was drunk...and in all seriousness I was just plain old fogged out me....How depressing! Our weather has turned decidedly winter-like, so I'm hoping it's just my body adjusting to the new weather. "they" say that fibromyalgia isn't a progressive disease, but honestly sometimes I wonder. When you're in a never ending (seemingly) flare, it's hard to remember that this too shall pass.

Like Cinders mentioned in her last comment, it's my online fibro links/buddies that keep me feeling normal and sane. I too go through periods of self-doubt and fear that this is all in my head. However it only takes a quick conversation with those I live with, or to get online with those that know first hand to realize that this is a very REAL disease. Who would make this stuff up, anyways? It's just easy to lose sight of what's real when your life and symptoms are so nebulous and ever changing.

Until next time...here's wishing good health to all!

hobbz

5 more days

2008-10-05T18:25:00.002-08:00

Only 5 more days of working in the hospital and then it will be working from home in my jammies...lol...I totally cannot wait. It's like a HUGE weight has been lifted off of my shoulders. I'm so confident that this is the right decision, it's not very often I have this level of peace with a big life altering decision. It's even to the point that it doesn't bother me when others (who don't understand) aren't supportive.

It's funny how people get stuck in a way of thinking about you, and even when you have changed they still see you as someone you were a long time ago. I'm not saying this with any judgement, because I've been guilty of it many times myself...I just find it interesting, is all. I've had comments like you don't want to leave work, because they'll forget who you are...in reference to the fact that I'm 38yrs old and my focus should be on career right now. If it weren't for fibromyalgia, that is where my focus would be...but in many respects I'm thankful that I've been forced to look at my life and how I view "success" in a different light. There are others who feel that I've set myself up for days of wallowing in pain and self pity, but honestly I don't see it happening. I have so many plans, and I will STILL be working, all that's changing is my ability to take care of my physical needs better....woot woot.

Only time will tell, if this has been the right decision, but in the end, it will only matter to me, my husband, and my son. Everybody else's opinion is simply that, an opinion. Going through this most difficult decision process has really opened my eyes to what's important in life, and who and what really matters to me, when you cut out all the bullshit. I know that peoples varied reactions are based out of fear, and ignorance and I have to just let that be what it is. It's not my job to make others feel ok about my decision, the only job I can take on is to help educate them on how it really is day to day, living with this disease, and hope that their awareness and understanding improves.

I know that both my husband and I have really felt better about how we feel about the disease when we read the comments that are posted...or the blogs that I have listed. It's allowed us to feel "normal" again, and not so isolated by this hellish disease. It takes away EVERYTHING that you have, but now we know that we are NOT alone and are thinking ISN'T distorted. What we are going through is normal and there are others out there that have the same struggles and understand our pain....without that knowledge and support I shudder to think where we'd be today????

thanks all!

hobbz

TGIF!!!!

2008-09-26T22:19:00.002-08:00

Whew...made it through yet another week, and this one was a doosey! I started a week ago today, with the worst headache of my life. I get migraines frequently, but honestly this had me thinking I was gonna die...so after a trip to the ER, a CT scan, and many IV drugs I made it back home. The thought is that now, of all things my blood pressure is sky high and that this might be the underlying cause of the headache. So, it's off to the doctor, some more, yet again, one more time...to probably get yet another pill to take daily. ack!

The good news though was that my neck appt went really well. No more Brace....Sweet! I can start to do non-weight bearing exercise so that's a plus, I'm gonna sign up this weekend at a cheap gym. The bone graft isn't fused yet but he suspects it will take at least 6 months...so I'm on my own for 4 more months.

Work has been crazy busy. I'm covering for a vacationing co-worker, doing my old position and my new position....yup crazy making I tell you. Many hours of overtime...hey wait....wasn't I supposed to be cutting back? Yikes. Only 2 more weeks and I'm happily working from home. Ooooh it will be so nice. My boss is also thinking that she will still need me after the new year so this could go on indefinitely, which would make my life mucho wonderful.

Other than that I've been spending all my "free" time...working on icky math homework with my son (you should see what they're doing these days...way over my head...lol) or more often than not...sleeping. Which is where I'm off to now. i have to make sure I sleep tons this weekend because I'm sure next week will be equally as busy as this one....

hope all is well in blog world!

hobbz

Only 3 more weeks of going to work!

2008-09-21T14:48:00.002-08:00

Woot woot...the count down is on! Only 3 more weeks and I'll officially be working from home, who could ask for more? Certainly not I at this point.

I go for my 8 week post-op check up on Tuesday, so hopefully I'll be able to lose the stupid collar, not that I'm wearing it much anymore anyways....oops, was that my outside voice? lol I'm hoping to be all cleared so I can start back at the gym and start getting my "post work" life going....tee heee hee hee. So far my only complaint is neck stiffness, which I'm guessing is pretty par for the course. My shoulder has pretty much resolved itself, there's a small ache at times...but it's NOTHING compared to what it was like pre-surgery! Wow dare I believe that my life is on the upswing????? Nope....don't want to jinx it!

Hope all my fibrofriends are well and practicing good self-care....i love you all!

hobbz

best of both worlds...

2008-09-16T17:04:00.002-08:00

So I know it's been a bit of a pause...but heh you blink and a week has passed! Yikes...maybe it's just age.....naw that can't be it....lol

I finally spoke to my boss last week and gave my notice (for a month from now). The totally cool and amazing thing is that she offered for me to just work on special projects...AND to do all that from HOME! Yes I said from HOME on my OWN time! Woot Woot!

I couldn't have asked for this to turn out a better way. I've been racking my brain trying to figure out what kind of job I can do from home, and here one just falls into my lap.

I don't have ton of time to explain right now, but I am so greatful for all the support that you guys have given me with this issue, that I wanted to post the good news! I'll write more in a day or two!

love you all!

hobbz

A decision made...

2008-09-03T20:07:00.003-08:00

So after a long weekend of vascillating back and forth....to work or not to work.....a decision has finally been made. In my last post I was in so much indecision, and all that disappeared once I was back at work on Monday, after very little recovery time over the weekend. It has become totally clear to both my husband and myself that at this point I just don't need to be working. I very much need to take some time off and get my health and my life back, to whatever extent that is possible.

When I got a great review on Friday, it was almost like I was seeing that old me, that person that strived to define herself by the work that she did. I am just, and I would argue even more valuable as a healthy me that stays at home. I think I just needed to morn that old life and get to a point of acceptance with the life I lead now with fibromyalgia. I so wish that I could convey to friends and family how different and difficult our life has become. Yet by the same token, it has certainly forced me to live life on life's terms and realize that I have more to offer myself, my family, and the world, by being the best me I can be. At this point and time I can't do that AND work.

So yes the decision is made, once my husband is back at work (2weeks from now), I will be giving my notice at work. While there is some fear around loss of income, both my husband and I know that this is the right thing to do, and have made peace with this decision.

I want to thank all those who also suffer from some sort of chronic/invisible illness that read this blog and help me keep a realistic perspective on where my life is at this point. Thanks you are all a life line for me!!!!

hobbz

in response to comments

2008-08-30T12:28:00.002-08:00

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!

2008-08-21T14:55:00.002-08:00

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

2008-08-21T14:21:00.002-08:00

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

2008-08-18T11:31:00.002-08:00

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

2008-07-31T19:09:00.000-08:00

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!

2008-07-16T15:52:00.002-08:00

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

2008-07-10T19:55:00.002-08:00

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

Better sharpen that knife there doc!

2008-07-08T20:05:00.002-08:00

So yup, you guessed it...surgery it is for me! The doctor wants me to have the surgery next week, however as our crazy life would dictate, my husband is having the exact same surgery except his injury includes several discs, on July 21st....soooooo....I'm probably going to have surgery the week after him, if we can swing it.

Now the intellectual, trying to keep perspective me, says "go with the flow, don't fight what you can't change" "it is what it is"....but WTF did I do in a previous life to deserve this crap???? I really need to vent for a minute here. I'm trying my best to slog through every crappy ass day with the fibromyalgia, even trying to change it into something positive in my life...but it feels like I just keep getting shit upon! My husband included. Every time we get to a point that we feel like we've made it through the crisis and our heads are above water, some sick s.o.b. decides to throw another wrench in the works and back to drowning we go! Isn't it enough that one of us has to have surgery? Apparently not! We both need to have it, and we're not talking a minor scrape or cut...we're talking spinal cords here. Man this sucks! Not exactly what I envisioned my life being...I'm totally aware that life is nothing but ups and downs...but I'm done with being sick and injured and broken and in need of 65 medications, while seeing 3 different doctors and trying to juggle all these appts and meds and work and marriage and parenthood and oh ya squeeze a life somewhere in there, when my fibro allows.

I know I'm just being bitter, but I think I'm allowed to vent and feel sorry for myself for one night before I suck it up and deal with the shit hand I've been dealt. Where can I vent if not here? I wanted to show what it's like to live with a chronic illness, well it sucks, not because my life is anymore difficult than anyone else's, but because I have the same trials and tribulations on top of feeling completely beat. You win life! I give....."uncle" I say...."uncle".

Argh...this is so frustrating! Now I run the gauntlet of letting everyone know what's going on, and I just am not up to it right now. This sounds totally perverse, but I was looking forward to being able to help my husband with his recovery, and in some tiny way, pay him back for all the times, he's helped me with my fibro, which, let's face it...is daily. Now I'll be available for a week and then we'll be commiserating together....If it's not one thing it's another.

So what now???? I suck it up and turn to all the tools that I've learned to deal with this crap! I focus on living in this moment, and this moment only. I'm not doing anyone any good by getting caught up in the past or the future. I also need to just let it go. "it is what it is" and nothing more than that....sigh.....sigh.....deep breath...sigh....ok...so that's just what I'll do.

Reading this, I sound like I have multiple personalities....and partly I do. There's that part of me that is soooo resentful at being sick, I just wanna scream....but the other part of me that knows I have to survive, tells me to just get over it and move forward.....
Maybe another night of no sleep will help me get better perspective....lmao...yes that's a statement oooozing with sarcasm...

I'm just gonna shut up now....and go focus on something else....I wish I had something better to offer, but here is where I am....and that also, is what it is.....

hobbz

An actual diagnosis!!!!

2008-07-06T19:42:00.002-08:00

Who'd a thunk it???? I finally after all these months/weeks have been diagnosed with a "slipped disc" in my neck. No....there is NO problem with my shoulder, barring the fact that my disc has slipped into the space where my spinal cord should be and is pressing on the nerve that apparently runs thru my back and shoulder. Who Knew????

Even though it took forever, at least now I know what I'm dealing with. The doc I had been seeing was a shoulder guy, so he's referred me to one of his partners who is apparently a "neck guy". So I see this neck doctor on Tuesday. By the sound of it, I'm headed for surgery, but you never know, this new doc might have some new fangled way of fixing this problem non-invasively. I'll keep you all posted.

Lucky for me the celebrex is still working and I'm not in much pain. My fibro though has been keeping me from getting any restful sleep for the past few nights, so even though it's only 7:30, I'm off to bed to hopefully read myself into a blissful nights sleep. LMAO as if???? Not so much with fibro, but it sounds sooo good!

When I first went to see my family doc for my shoulder (aka neck), I was asking her about what I can do to get my energy at least to a point where I can workout, in some small way. She suggests that once I get my shoulder (aka neck) figured out, that she is going to send me for a sleep study as she's seen some promising treatments out there to help fibromites the deep restorative sleep that we soooo lack, so I'm also looking forward to that. It's a downhill spiral...no sleep leads to increasing exhaustion, which leads to increased pain, which leads to an inability to sleep, which leads to exhaustion=pain=no sleep....you see where I'm going with this. You throw fibrofog on top of all that and you have one cranky, non-thinking, exhausted, barely functioning person....and it's beginning to feel like that's a good day for me....sigh....

One thing at a time, has to be my focus. I can't spend today's "spoons" worrying about tomorrows "potential" problems....so for tonight it's off to my comfy bed, with my comfy pillows, and my furry dogs to keep me warm! I'd complain that my husband is away at work...but for tonight, no snoring and a king size bed to myself, sounds pretty darn nice!

night all

hobbz

Wow...meds that work?!!!!!

2008-06-30T20:20:00.002-08:00

So we finally got me on Celebrex, which made an instant impact on improving my shoulder pain! Yea!....we've actually discovered that my problem is in my neck and not my shoulder, who knew? I in fact am having trouble with my c5 and c7 vertebrae. I had an MRI done last week and will see my doctor on Thursday. To my untrained eye the results of the MRI look bad, but I'm hoping that my doc doesn't see it that way...ick.

But since the meds are working, I'm hoping to be back up and running with my blogs. I tooks some great pics this weekend when we were out camping and will try to post them in the next couple of days.

As for my fibro? It's been up and down. It was funny, cuz when I was taking the heavy duty narcotics, I was feeling pretty good as far as the fms goes...in the narcotic haze it never dawned on me, that it was actually the narc's doing their job...lmao...sometimes I'm a little slow! One of the side effects of oxycotin is that it worsens restless leg syndrome, from which I suffer....man....I do NOT repeat NOT want to do that again. I've never had so many long nights of no sleep in a row...not to mention pacing around the house so I wouldn't go crazy with my legs...keeps me from wanting to be addicted that's for sure...lol...so now I'm in wait and see mode and just enjoying (if you can say that) only living with fibro and not my shoulder pain too. How weird life is!

I'll keep you posted on my doc appt. hope everyone is well! It sure feels nice to be back online!!!!

hobbz

sigh

2008-06-10T17:45:00.003-08:00

So obviously, I'm still struggling with my shoulder. I totally hate not being able to blog...but sitting and typing is very painful. I had a steroid shot last week and I'm still waiting for it to kick in...I'm hoping that will be soon.

I feel like I'm really losing my momentum, with the blogs, and my health and my life in general. This is so damn frustrating!!!! I am soooo tired of hurting, and being in a fog due to the narcs and not sleeping crap crap crap!

sigh, what doesn't kill us will make us stronger, right?????? I sure hope so!

I will be on as soon as possible! please please keep tuning in!

hobbz

On the mend????

2008-05-13T17:09:00.002-08:00

So the good news is, that my arm is no longer excruciatingly painful, just a 6 out of 10 on the old pain scale that we're all so familiar with. It used to be a 9-10 so progress counts for something. My doctor put me on prednisone and now my heart has been doing funky things like pausing to take a rest instead of jumping into that next beat. I spent Friday night in the ER after it kept missing beats for about 2 hours, of course it was even doing it in the parking lot of the hospital....but the minute I was hooked up to that cardiac monitor, it just chugged along for 3 hours in normal sinus rhythm. Just like going to the repair shop with your car. It's done it several times since then, but my doctor says she thinks it's just the steroids and that it should resolve itself over the next couple of days, if not it's back to the doc I'll go.

I have made some improvements in PT so, I'm hoping that I'm on the upward swing for now. What is it they say about expectations???? "they're just future disappointments/resentments"??? Well I'm trying really hard not to build any, but I sure do hope that things are slowly improving at this point. All though I have to laugh because I keep miss typing my words as my finger tips are all numb on my left hand. yikes.

Sleep too, has come a little easier with the decrease in pain. I actually just got up from a lovely nap, that was simply divine!!!! aaaaahhhhhh, I love naps! Aren't they just the coolest thing?

So here's hoping that the tides have turned....

hobbz

"kinda, sorta...but not really"

2008-05-08T21:09:00.001-08:00

So this has become my mantra of late. "kinda, sorta, but not really"... is my shoulder getting better???? kinda sorta but not really. Nobody seems to know what's wrong with it, and it still hurts like hell. I'm on constant doses of oxycontin which is making me quite useless, yet I'm still trying to work and function, because I only just barely have enough vacation time to get through my trip to Canada this summer and I'm down to 1.46 hours of sick time. So pretty much on the work front I'm screwed. On the home front, my husband is in town for now, so it takes alot of the day to day tasks off my shoulders, but doesn't make it any easier on him or our son....sigh yet again.

I went to the doc for the 4th time now, and she added prednisone to my steady diet of pills and patches. So far it's been 2 full days and the pain is slightly dulled, so keep your fingers crossed. I've also been getting only about 4 hours total of sleep a night which is good in that, it's double over the amt. from the last 2 weeks but it's about a third of what my body needs in reality...on a good day, let alone a bad fms day.

I had a shoulder x-ray done, as my PT and doc were sure I had either a bone spur or cartiledge damage....but nope...everything looks "perfect" with my shoulder. Now in most instances this would make me happy, but right now it totally sucks, cuz we're still completely lost in terms of what is wrong with me. Quite frankly the pain and lack of sleep are really getting to me! This whole situations sucks!

All I can think is here's hobbz complaining yet again..some more...another time. It seems like everytime I get over one major health issue another comes up. So here I am with major injury/problem number 4 in as many months. 2008 can retire right flipping now for all I care. lol.

So I apologize for letting both my family blog and my fms blog suffer, but I can only do what I can do, and at the moment: what I can do is pathetically little. For the now the plan is to continue with PT for another 2 weeks and if there isn't "significant" improvement then it's off to the MRI and an ortho surgeon consult...ick ack oop. Please, please no!

On a completely different topic, I hope folks had a chance to read the "spoon theory", it's the most honest and accurate account of what it's like to live with a chronic illness/disability that I've come across. Though it was conceived of and created by someone with Lupus it speaks totally of my experience with fms, and I'm guessing the same is true for MS, chronic fatigue, etc....

fight the good fight folks, and I'll try to be on more!

hobbz

This is the best description yet...

2008-04-23T13:42:00.001-08:00

So I stopped by Cinders' site and saw reference to "The Spoon Theory", when I read it, I just had to take that extra spoon and add this story to my blog. It is by far and away the best description of what living with fibromyalgia is like that I have read thus far. Please take the time to read it.

http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

until next time...

hobbz

I've been M.I.A....

2008-04-23T12:59:00.002-08:00

So it seems like forever since I've been able to post something, I'm sure you were beginning to wonder where I've been. Well, continuing with my great and "healthy" 2008, I've somehow torn my rotator cuff in my left shoulder. Wow, a whole new definition of pain has been discovered. I've been in absolute torture, which makes me sound really wimpy, but fuck it hurts! I've read lots of stuff on the internet that says, "you make experience discomfort when you lift your arm" or it may hurt to lie down...well let me tell you for the first 5 days I was at the doctor's twice and a massage therapist once, popping narcotics and anti-inflammatory pills and all I could do was pace. There wasn't a single position that wasn't excruciating. So now I'm on my super duper narcotics and I slap a lidocaine patch on for 12 hours and I'm hovering somewhere around not quite bearable. I've never quite experienced anything like it.
The doctor is sure that it's my rotator cuff, but the orthopedists won't accept me as a patient until I "fail physical therapy"....it's taken a week and a half to get a physical therapy appt., which is in 4 hours and I have to go for at least a week maybe two, to determine that it isn't helping. To be quite honest, this is way ridiculous. Just give me the damn MRI and decide whether or not you're going to do surgery! I'm not looking forward to another 3 weeks of this, before maybe, I might, on an outside chance possibly get an appt with a doc who can actually relieve my pain. ick.
So I wanted to rant and let you know I'm still alive, but that's my limit for sitting at the puter....

hobbz

bouncing back

2008-04-02T13:04:00.002-08:00

So Saturday was awesome and I did my fair share of napping, which was much enjoyed. Sunday however was a total screwed up bust. Suffice it to say that a huge family issue came up, I don't want to get into any details, but suffice it to say, being in a "blended" family, and having to deal with ex-spouses, step-children, etc can really be a challenge. Much to my own shock and horror Sunday was one of those days....and here is how one totally hellish day can go for a fibromite, like myself.

Woke up totally feeling better than I had in several days, since I got caught up on my sleep, luckily. By 10:00 a.m. my world had totally and completely out of the blue, blown up. So like dealing with a major "family" crisis isn't enough...I can slowly feel the pain start creeping into my legs. After a few hours and much pain medication, that pain has become intolerable, but doesn't really matter, cuz I still dutifully have to meet the needs of those who created the crisis. By 4pm I knew I was pretty much going to be screwed for many days. Sleep hasn't come more than about an hour at a time since. My pain on a scale of 0-10 is sitting pretty consistently at an 8 for 3 days now. I got to tell ya, there's not much in life that's more wearing on the soul than chronic pain! I'm in one of those spots, where I just curl up in the fetal position and try to keep things as dark, still, and quiet as possible. How very practical....not!

I've again found that I've really isolated myself in a lot of ways....but I think it's been also a way of insulating others from what I go through regularly. The difference on Sunday is that I actually reached out, asked for help, and found that I have some pretty amazing friends out there, and a brother that is second to none. Not that any of them did anything earth shatteringly big, but they just simply supported me without question. I guess I've created a scenario in my head where I feel like I have to explain myself. They just recognized the situation for what it was and listened to what I had to say.

There's that nebulous point in life, once you've found your significant other, and established a life together....then you (err I) realize that the focus of your whole world and support has shifted ever so slightly, but in a very different direction. Growing up we just know that our parents are always there for us and we don't question. When we become young adults and first marry, we spend time bonding with our spouse and slowly changing that ever important parent/child relationship to one of parent/adult child. Well I have my new immediate family, and we've been together almost 9 years, and I love my husband and son more than anything in the world, and couldn't ask for 2 more committed people to build my life with. ..... yet something of late has shifted and I'm not sure what that is..... it's not good....it's not bad....it's just different.

I'm not sure how to explain what I'm getting at here. I guess it's the fact that in my marriage and with my child, we work very hard together and discuss very openly how we're feeling with each other. On the flip side of the coin, I come from a background, where that kind of openness wasn't there. I always thought that finding your soul mate meant that everything just clicked and problems didn't pose big obstacles.....yes I know I was very Naive....but here's the deal; after having been with my husband for 9 years, we become a stronger couple every single day, and that is in direct correlation with how committed we are to each other as well as our commitment to working out whatever life brings our way.

So on Sunday, when I was in immediate crisis and my husband was 3000 miles away, I had a choice. I could just deal with the situation by myself and wait to hear from him ( which is my automatic default mode), or I could phone a parent and look for support there, but in the end I phoned a friend and then once things had calmed a little I explored the situation with a couple others. This is rambling on and probably sounding really confusing right now, but the important thing I got out of this experience, is that I don't have to be alone AND I don't have to insulate others from my disease (pain).

I have a soul mate second to none, a brother that I can always count on to tell me the truth and support me....and I have created my own independent support system of friends etc that are there for me night or day. For quite a number of years now, I've tried to be really self-sufficient and then only rely on a couple of key individuals to support me in crisis. My life is what I make it...and I by choice (but quite unconsciously) I made my circle too small, there's not alot of support and love that comes from that. By taking chances and risking my intimate emotions and thoughts with others, I've created a support network that I've really come to cherish.

As I type this it dawns on me that that's what "growing up" is all about. I don't know that I fit into the "grown up" category, but I do know that I drew alot of comfort from the knowledge that I wasn't all alone on Sunday. When I said on the phone " I just wanted to know that someone was on my side" the response was ever so simple, yet one of the most powerful I've ever heard "of course I am, where else would I be". I wasn't questioned, I didn't have to justify myself...I was simply believed in. These last few days with my fibro have been a challenge to say the least, but I've known throughout that...if I need to, I can pick up the phone and someone will be right there for me, with no other expectation than to help me feel better.

I'm so used to feeling a need to defend myself, that it's a relief and unsettling all at the same time....hmmm is this what being a grown up is all about? It's a very strange place I tell ya....

hobbz

Yay it's Saturday!

2008-03-29T10:52:00.002-08:00

AAAAAAAHHHHH Saturday, is quite possibly the best day of the week. One can sleep in late, no work has to be done, you can stay up late, and still not have to worry about going back to work until Sunday. I never really appreciated the beauty of a Saturday when I did shift work, since my days off were all over the place....but now that I work 5 on and 2 off, for the first time in my life I don't have to work on weekends, I've really come to appreciate this day. sigh

This week seemed like a long one. I think my body still isn't 100% recovered from the flu, so I went through most days in an exhausted blur. It's funny how still, yet again, some more...I (unconsciously, I hope/think) try to fight the fibro and be "normal", whatever that is. I went through Monday and Tuesday, just dead ass tired but plodded through. But then by Wednesday, I was past the point of over-exhausted and I STILL had to convince myself to go lay down for a nap. Why do I continue to do this, I just don't know. A nap is such a simple thing....but wow can it make a difference. I slept and felt soooo much better afterwords. Life just seems so much easier to cope with when I've had a little sleep. The telling thing is however, that when I went to work Thursday, 3 separate people stopped me and said I "must be feeling better" and that I "finally had some color back in my face".

I just have to shake my head, it really spotlights for me how hard I'm still fighting this disease. Even now when I feel like I've really embraced it and tried to integrate it into my day and work with it instead of against it. I'm sensing I still have some more work to do in this area....lol
I'm such a creature of habit, and my habit has always been to work harder and stronger at everything. I'm digging myself a whole here and still trying to figure out how to find a happy medium. I know that this is just part of the learning experience s we humans struggle with. It's not made better or worse by my fibro....it's just highlighted and prompting me to work on this particular issue probably quicker than I would have without the disease....that at least is a good thing.

well i'm off to enjoy my Saturday folks! Maybe I'll even take a nap! lmao

hobbz

I've been tagged

2008-03-26T20:59:00.009-08:00

So apparently I've been tagged and now I need to write a six word memoire...wowzers...no pressure! LOL

Living...Last life to next life!

I was tagged by DJS at http://dj-astellarlife.blogspot.com/

now for the fun part...the following people have been tagged
1. Write your own six word memoir
2. Post it on your blog and include a visual illustration if you want
3. link to the person that tagged you in your post and to the original post if possible so we can track it as it travels across the blogosphere.
4. tag at least five more blogs with links.
5. Leave a comment on the tagged blogs with an invitation to play.

http://soxandcinders.blogspot.com/

http://nightmare54.blogspot.com/

http://bree-theblogblog.blogspot.com/

and that's all I'm going to tag for now, cuz I don't post on a whole lot of blogs, but I do read several....these are 3 that I read regularly tho.

Anyone else that feels like continuing this memoir string please feel free to say that I was the one who tagged you....I'll even add ur blog to the above list!

have a good night folks

hobbz

Did you miss me????

2008-03-23T09:38:00.002-08:00

So yes at long last I'm back on the blog. As I said in my last blog, I lost the race with our puppy to the scooby snacks. Turns out I broke my rib....OUCH. Then if that wasn't bad enough....I caught the flu shortly after that, so I was pretty much K.O.'d for a good week and a half. I started feeling appreciably better this weekend so I'll be back at work tomorrow.

The good news however is that I did get to see the rheumy who specializes in fibromyalgia, this past week. He took me completely off the amitryptaline/elavil. I was taking it to help me get to sleep at night. He was surprised that my docs put me on it. His concern is that all it does is promote weight gain, which oddly enough is what I've been doing since I've been on it. At least I know it wasn't ALL my doing! So in it's placed we have doubled the amount of cymbalta that I take, which is great. One, because I really have alot of reduced pain with the cymbalta, and two, I always like it when I can get off one of my meds as opposed to add another one. My concern was not being able to get to sleep, but I've always taken my cymbalta in the morning. Now I take double what I have been, but at night. I started this on Wednesday night, and with the exception of last night I've been sleeping reasonably well. One night of not sleeping is much better than the avg for me so no complaints so far. The increase has upset my stomach a fair bit, but I'm told that that will be a temporary side effect so all's good. The best part is that I have noticed less pain since the increase, which ultimately is my goal, so what's my conclusion thus far???? Four days in...and so far it's two thumbs up! I'll keep you all posted on that though.

The doc also suggested I get a "hydropillow" which is as the name indicates, a regular pillow that has some water in it too. He said that he's found in his fms patients that these pillows really help decrease the neck and shoulder stiffness, and pain. I haven't picked one up yet but hopefully this week. He gave me a bunch of stretches to do, morning and night, just to keep my muscles stretched and relaxed, I'm hoping now that I'm feeling better I'll be able to get into a routine with all of this stuff.

And of course, as all fibromites know....exercise is our friend! kind of....Even he states that initially it's going to hurt, but in the long run, it will go a long way to promoting better muscle health and hopefully less intense flares. With my rib I'm kind of limited right now, but I'm working towards the exercise routine slowly. In the past I've always tried to jump right in there and set up a routine of working out 5-6 days a week....and guess what???? can you believe it??? It never worked and I'd just give up! YES....I'm slowly, little by little....starting to see the errors of my ways! So now my goal is to get to the gym at least twice in 7 days and stretch at least once daily.....we'll see where that takes me.

So all in all it was a good visit. I go back in 5 weeks to see how the med change has worked and we'll go from there. At least I feel like I have a workable and reasonable plan for now!

hobbz

Checking in...

2008-03-06T20:50:00.000-09:00

I thought I'd put up a quick post before going to bed. It's been a long week with our budding "adolescent" which has taken a toll on me. I am however, proud to announce that I was really good at taking care of myself this week in spite of the hormones that were raging in our house LOL. Taking the time when I needed to instead of doing laundry or washing the kitchen floor, which really needs it by the way...really helped me to not get overwhelmed with my disease and the daily crap that arises. So kudos to me I guess.
My biggest issue was having my dog trip me and falling down the stairs on Monday....ouch....the muscle that was already torn....yup not so much healing now! The rest of my back has gotten to the stage that it's just stiff, so I'm back to square one, with the back....but what can you do. Lots of ice the first couple of days and then it's been heat the last day or so....slowly but surely it will get better???? i hope!
It sucks to not heal as well as one did when we were younger and then add fms into the mix and you create a muscle nightmare lol.....yikes

hope everyone is well....fight the good fight

hobbz

Yea for the weekend!

2008-03-01T21:46:00.000-09:00

The best thing about weekends for me living with fibromyalgia.........is the opportunity to sleep! Man o Man do I love my sleep! After a week of working and everyday life it's feels so nice to get caught up. Slept in until almost 11 a.m. then my son was out playing with friends so I took a 2 hour nap in the afternoon and now it's almost 10pm and I'm off for some more sleep.

I guess that's both good and bad. It is definitely a necessity so I have to catch up. The bad side is that as Cinders was saying in her last comment "do i have much of a social life?" ----nope. That's another part of the whole equation. Is my quality of life what it should be? or what the avg person's is? that's a pretty subjective thing to judge but I'd love to be out there snow shoeing or skiing or hiking or fishing, on the weekends as opposed to sleeping. I also try not to sleep alot when my husband is working out of town, because that's not really fair for my son. Luckily tho he's 12 now and is out with friends or snowboarding in the afternoons so I can sleep guilt free. Hopefully tomorrow won't be so tiring, but after groceries, lunch out, and hair cuts' today....I was drop dead tired. What r u going to do?

have a good weekend everyone......and oh by the way......I love the fact that this blog is starting to reach other people! it's great to hear other's experiences, it brings alot of hope and normalcy to a situation that feels really out of control and crummy! So thanks guys!!!!

hobbz

Wow 3 posts in 3 days...new record LOL

2008-02-28T13:03:00.001-09:00

Cinders had so much wonderful information in her comments to my last post, I thought I would just respond to them in this post so here goes.

I'm not so sure that I've listed all of the meds that I take daily, thus far. I've mentioned them separately but here goes the list....

-CYMBALTA 30mg daily. This is a "two-fer"....it does double duty helping with depression as well as pain control. I love it, it did wonders for my pain.

-TRAMADOL 50mg every 4-6 hours...technically I should only be taking four a day but usually it's more like 5 with extra strength TYLENOL as well

-AMITRIPTYLINE 50mg at night, which is also a mild anti-depressant, but I take it to help me sleep.

those are my fibro meds....I also take DOSTINEX twice a week for a pituitary tumor, PRILOSEC daily since my inactivity with the fms has contributed to me blowing up like a whale (whole different topic), and last but certainly not least I take MAXALT for frequent migraines.
Sometimes I feel like I'm a walking pharmacy here....ack. I like the idea of a morphine patch, if it would cut through the pain in my legs...but that's a big step and one I don't want to be taking while I'm working. The good thing is that I can bring all of this info to my rheumy appt in March and see what he would suggest. I know that the lady that referred me to this doc. said that they experimented until they found the right medication fit for her....so that sounds very promising.

Next on the hit list is EXERCISE which goes right in line with my weight. I'm really struggling in this area right now, and I'm not sure what the block is for me. I've been losing weight with the help of a bariatric doctor and have done quite well. But I've taken a break from it for the last month or so, in order to get my head into the right place to make it all work together and stick for good. I'm done with going up and down all the time, and it sure as hell isn't helping my body any. Exercise is my biggest obstacle right now. It seems sooooo hard to stay on track and keep up the motivation. I start work at 6am so I can't workout before work, which in the past has been what's worked for me....instead I've been trying (using that word very loosely here) to go after work. The problem is that by the time I get off I'm soooo friken tired and the pain has really kicked it up a notch and the last thing I want to face is doing something physical. I've got a free weeks pass to a local gym that has a warm pool as well as a cold pool and it sounds like that might be helpful from what Cinders has done. so thanks Cinders I will definitely try that out this week.

I've thought about a tens unit,but haven't gone so far as to purchase one, it's on my question list for the rheumy though. Like I've posted before, our jetted bathtub and our new heated mattress pad have gotten me through alot of rough days! yea!

It's so nice to hear someone else's experiences and what does and does not work for them.....that's why I started this blog in the first place....so thanks Cinders for your comments!

I have a link to Cinders's site in the left hand column of this blog, check it out it's really good!

later,
Hobbz

A new day dawns....

2008-02-27T17:20:00.000-09:00

So a new day has come and I'm not feeling so "rant-ish" today; Lucky for you! LOL

Today fms has brought complete and utter exhaustion, which isn't all that surprising given everything I have on my plate right now. I'm trying to just ride it out and to identify it as it is....and for today all it is is fms. It's not me, just the disease. It was VERY hard to get out of bed this morning, and when I did everything just hurt....but here I sit and its early evening and I made it through the day, with my wits somewhat intact.

The good news is, and I don't think I've posted this yet, is that I have an appt. on the 19th of March with a rheumatologist, here in Anchorage, who specializes in FMS. Yea! I'm really hoping that he can help me manage the disease better than I am now, since I'm really struggling right now. I heard about this guy through a lady that works in the same building as me, obviously she has fibro too. I'll update you on the results.

I'm also still struggling with my torn back muscle, which if memory serves, I mentioned a few posts back. The frustration is it takes so much longer for muscle's to heal with fibro....it's a long and slow process....heat and Tylenol are good friends. I also bought a couple of those adhesive warming patches. I'm not entirely sure that they help fix the muscle problem, but it sure does decrease the pain, so I give them 2 thumbs up. I'm open to any and all suggestions though.

I'll keep it short and sweet (debatable) and sign off....I'm just trying to get into a habit of posting regularly.

until next we meet!
hobbz

I'm in rant mode today (blink blink)

2008-02-26T13:33:00.001-09:00

So here's the deal, I've written and re-written, and edited and re-written this stupid post several times at this point, and I'm having a really hard time getting my feelings down in words. As I've posted before my husband and I are in the middle of trying to decide whether or not I can feasibly stop working at this point and time. I firmly believe that I'm at a point where I can see the difference in the quality of life that I have when I'm working vs. not working, with fms. I have gradually over the past few years gone from working well over full-time hours, to now only working 30 hours a week. When I have time off the difference that it makes with my body is amazing. Not that I have more or less pain, fatigue, exhaustion,etc...but when I'm not working I have the time and freedom to take care of my own needs when I need to, and not to try and work through it because I have no other option.

Granted this is only a decision the my husband and I can make, but I have brought the topic up with several different people now, just to get their perspective. Sadly what ended up happening, is that I've found out that there are a few people out there that obviously don't get how much this disease affects not only my daily life, but those of my husband and son's too. I'm not sure why this bugs me so much, but it really really does.

I want so bad to communicate to people the devastation of this disease without being looked on as faking it....or be pitied because of it. When you are healthy you take for granted that those people closest to you will be there for you no matter what, but when you become sick, you really find out who will and will not stick by you. I'd like to say that it doesn't bother me what others think of me, but deep down inside it does, and I'll get over it. It's just another dynamic of being chronically ill that isn't talked about as much as the symptoms are. My husband and son are totally amazing and they both know exactly what fms looks like at home. I know that they would be just as greatful as me, if we found a way to make things work in our home without me working. When it comes down to it....their opinions are the only ones that really matter!

There's also this fuzzy line of how much of the impact of the disease do I share with people outside my immediate support system. I'm not ashamed of having fms and I have no problem being open and honest about my disease and the toll that it takes, but at the same time....one has to really pick and choose who to share this information with. Not all employers are supportive, not all friends and families know how to deal with such a big change in their loved one's life/health. I was diagnosed with this disease in may of 2005....well we moved to Alaska in August 2005 so really none of our immediate family has been around me much to see how my life has changed. And of course I shoot myself in the foot anyways, by trying to not let my disease impact others, so I try to "tough through" things, or say "everythings great" when it really isn't.

In that respect I'm just as much to blame as anyone.....this is so fricken huge and overwhelming right now. I know in my heart that what I need to do is quit working....but it isn't that easy and it's going to take some time to get to that point. So in the mean time I need to figure out a way to make all the different facets of my life mesh together....regardless of how outsiders see me or my family. But easier said than done.....hmmm i'll have to ponder this for a while

hobbz

just checking in

2008-02-08T12:59:00.000-09:00

I've been a real slacker when it comes to the blog lately, but I'm trying to get back into the swing of things. I've been really tired lately. That get up in the morning and all you want to do is take a nap for about the next week....sound familiar? well that's me. Through some unforseen circumstances I had 2 and a half days off of work this week and it really really helped to get rested up. It's amazing what a difference sleep can make. That sounds like a really obvious thing and a stupid comment to make, but I'm serious. I remember back to when I switched from a night shift job to a day shift job, how much better I felt, and how much clearer I could think. Well the same holds true for fms, you don't realize how exhausted you are until you get some rest. Sometimes I'm amazed at the level at which I've been functioning without realizing that I'm exhausted mentally and physically.

It's hard to keep that perspective when you're in a bout of pain, or exhaustion, or more frequently than not, in a bout of pain AND exhaustion. Then on top of that throw in the typical fibrofog and it's amazing we get anything done at all? This makes me both laugh and take a serious pause at the same time. It's the constant struggle to find some sort of balance with your body, when the fibromyalgia keeps changing the rules. Just when you think you have it figured out, something changes, and you are thrown off kilter (no idea how to spell that one), only to start at square one again. As I'm typing this I'm laughing because this exact situation happened this week and I didn't even realize until right now, what took place.

Like I said I had a couple of days off this week and was able to catch up on some well overdue sleep. I know I've said it before but our bodies are not able to get enough restorative sleep with fibro. The key to that fact, for this story anyways....is that it's during that ever important sleep cycle that our bodies repair our muscles. Over the day we get tiny tears, especially from working out, and then at night our body repairs these tears, thus creating added muscle. Well I've been trying to work out regularly lately, but this week was an off week. When I woke up yesterday and sat up, I felt the muscle from my neck down past my shoulder blade (for lack of a better term) rip. It's wasn't like a spasm, it either tore completely or pulled itself to a major extreme. Well of course this was tear provoking painful, but now after a day it's only worse because now it's stiff, AND my body isn't getting the proper rest to repair the muscle, which is why I have chronic pain in the first place......yikes! This happened about a year ago and when I went to the doctor there wasn't much she could do since I'm already on so many pain meds to begin with. Long story short....I just have to live with it and hope it heals itself soon, with lots of heat and tender loving care. ack! It's funny though that when one situation got better, the rest helped my exhaustion, then another thing jumped right into the mix (stupid muscle).

This ramble takes me to another point, and that is...that I just found out recently that Tramodol, which is one of the pain meds I take is actually considered a narcotic. It's an extremely low dose narcotic, but a narcotic all the same. YIKES /OMG / WTF... I know it doesn't change anything really, but I was under the peaceful illusion that I was managing my fibro without narcotics....crap so what now? If i'm on narcotics I might as well get a stronger one since this one just barely covers the pain gap, most days. I supplement it with extra strength tylenol several times a week.

****note to self***** must speak to doc about this!

Can you tell that I'm in a real funk with this dumb disease right now???? Part of me wants sooooo bad to just quit my job and take care of my body.....but then my next thought is.....then I'd have the time to workout like 4 hours a day and get my body in the best shape ever.....but come on......that doesn't even make sense....if I'm able to work out 4 hours a day then I should be able to work 6 hours a day.....ack....it's so frickin confusing. I just want to feel better, but I have no concept right now, of where to start. I wish I could focus on the regular things of life. You know what I mean? Nobody grows up thinking "I hope I get a chronic disease, when I grow up", but sometimes it's just all too overwhelming. It's not often that I think "why me"....but today I ask you...."WHY ME?". Then I feel stupid for writing that, because I know that everyone has there own challenges in life and I'm no worse off than most....It's like having the devil on one shoulder and an angel on the other....this sucks.....suck it up.....I hate it.....what's the big deal...and on and on and on. Maybe I have multiple personalities???? lmao....just kidding.

So folks that's where I am today....nothing profetic or wise or even insightful to say. I wish I had something new for you, but it's just another day with fms. Maybe my problem is that I'm trying to find an answer on how to deal with this....so I don't have to deal with it anymore.....hmmm I don't think that's going to work...lol

hobbz

What to do?

2008-01-25T09:37:00.000-09:00

I haven't posted in way too long, but I've been wrestling with some pretty major issues, and time just flies by. Unfortunately most of these issues have to do with my fms, so I guess there's no better place to voice them.

First off is my exhaustion level and simple all around fatigue and pain. I took just over a week off over Christmas and I noticed a HUGE difference in how I felt day to day. If I needed to take a pud day and rest it was fine and I got my body back on track relatively quickly. The problem is that I work and can't be on vacation all the time. I noticed right away when I returned to work that I just become more and more exhausted as each day passes and then by the time the weekend arrives, I need to spend the bulk of my 2 days off resting and recouperating....only to start all over on Monday. This takes a toll on my physically of course, but also on me mentally. My tolerance for noise and those unexpected details that come up in daily life. If it were just me at home, I would probably be able to skate by....but the fact is I have a husband and a 12 year old that I'm accountable to and want to share my time and energy with. When I'm exhausted and in pain, quite frankly I'm bitchy and that isn't working well in our household. My fms is the big elephant in the room that everyone is trying to side-step around. So the question here is....what are my options. Well I could cut back on my hours at work.....no wait I've already done that, and I need the health insurance. I could spend my time home in my room and keep my family insulated from my poor health and subsequent poor attitude.....nope that's not much of a way for any of us to live. So the only other thing I can come up with is to quit my job....but is that feasible? nope not really! We need the dual income, and we're stretched waaaaay thin with finances as it stands now.....so folks......what's the answer???? I just don't know! I feel so crappy about the situation that my illness puts us in and when I'm tired and hurting....that guilt is amplified to the max. I guess I don't have an answer yet ---- but my husband and I are working on trying to maybe, just possibly, on an outside chance.....of finding an answer that works for our family.......i'll keep you posted on that one.

So the second issue follows very closely on issue number one's heels. Quite frankly it's all so very convoluted and fuzzy. Hmmmmm kinda sounds like fms itself...."convoluted and fuzzy" lol
lol lol lol. Logistically trying to figure out the physical details of our dilemma is one thing; however just the same as my feelings are all over the map....so are the feelings of my husband, and 12 year old son. My husband feels helpless because he can't ease the disease, not to mention the fact that he too is justifiably angry with how the disease has changed me. Our 12 year old too, is angry and tired of fms.....and he feels responsible for my symptoms. So where is the magic balancing point on this teeter-totter of disease. I need to share with both of these guys, when I need to take a break and explain that's it's simply the disease doing what it does. None of us have control over it, or can make it better or worse. The problem is that I feel like we're constantly talking about it and our life is centered around the disease.

Reading over this last paragraph, I'm frustrated because I don't feel like I'm finding the right words to express how I feel.....or more importantly how the guys in my life feel. I know I need to name the disease when I'm having symptoms to clarify that it's not ME personally or THEM personally that are having a negative influence on how I feel....but at the same time it feels like that's all the time! I guess at this point all I can do is rest when I need to and not try to be the huge over achiever that I've always been. Maybe just shooting for some normalcy is all I should focus on right now. I just don't know.

sorry B.....sorry L.....
I wish you guys didn't have to deal with this!

hobbz

Same issues----Different Perspective

2008-01-06T10:39:00.000-09:00

I am a member of the National Fibromyalgia Association, as I'm sure I've mentioned before. Every month they put out an electronic newsletter this is an exerpt from one of the articles written by a patient with FM, that kind of rang true with me so I thought I would share it with you....

"Around 1998 my pain wasn’t very well controlled. I couldn’t understand the pain that had now moved to my legs and arms. A constant burning and stinging pain that never goes away. I recall lying on the floor with my head in my wife’s lap saying that I would rather die than have to live with the pain.....
For me, my pain is a constant reminder of both my ... FM. I don’t have a time during the day that it isn’t gnawing away at me. When I go to bed at night I have difficulty sleeping and routinely wake up feeling like I haven’t slept. But I have found two things that have kept me going from day to day with an eye on the future. First is having focus and setting goals. For me, having something meaningful to work toward and setting personal goals helps to keep my mind active and not focused on pain. The second and most important is my wife, Pat, who never gave up on me, never left my side, and always was there for me. She shared my defeats and sorrows but was a constant. She reveled in my victories and has shown and shared her true love"

These words rang true for me in a couple of different ways. One, it's a constant reminder to me that I am not "crazy" and the pain is very REAL. It's not something that comes and goes. Yes the intensitiy changes, depending on whether or not I'm in a bad flare up....but I have pain constantly 24/7 and it's just a manner of how well I can control it with meds and activity. Sometimes I feel very isolated and alone, and it's hard to focus on the big picture, but the author is right; it's key to keep focused on future goals or dreams, so as not to get bogged down by the pain. Which leads right into the second thing that hit me, that is the never failing support of a spouse who goes through ALL the ups and downs with you. They might not feel your pain, but they have their own pain, watching someone they love go through the litany of symptoms that come with fibro. There has been many a time that I have looked at my husband through tears, and said the very words " I'd rather die than go through this pain any longer". Do I really want to die? NO, but this disease just wears you down and when you're in a low point, it makes all the difference to know that you have someone to lean on, that will prop you up and take care of things for you until you can get to the other side.
So with that said, I would like to thank my husband Bret for EVERYTHING that he puts up with, and endures, as part of this disease. It doesn't just affect the person with the disease, It creates a whole new dynamic in any family, including ALL family members.

Thanks Bret for everything, I don't know where I would be without you!!!! From the last one to the next one chooch!

hobbz

It's been awhile....I know....

2007-12-21T16:07:00.000-09:00

So somehow life gets busy and I let time slip by without writing anything. The question I have is where does the time go???? Christmas is in 4 days for crying out loud....YIKES! I can't even tell you what I've been doing, I'm sure it was highly industrious though....not.

I have 10 days off over Christmas and I'm soooo excited. I can't even remember the last time I had that amount of time off. My husband is home from work, he works 2 weeks away and then spends 2 weeks home. So we get to spend some much needed time on our own for a week before he goes back to work. Once he leaves I'll have 3 glorious days on my own, which is VERY overdue. It's nice just to have time to recharge and not have to worry about anything. Stay up late and sleep in late, that's my kind of holiday.

I've been really achey the last week or so...not sure why, there probably isn't even a reason, fibromyalgia does what it wants when it wants so I'm just trying to roll with it. I don't like having to increase my pain meds though. I'm lucky that I only take Tramodol, which is non narcotic and non habit forming. I can also augment it with Tylenol...which has been pretty standard over the last few days. I find this stuff comes and goes, I'm just glad I've been off for the last 2 days, cuz it's awfully hard to concentrate with radiating pain all over. My in-laws gave us a heated mattress pad for Christmas....it has individual controls on each side MAN LET ME TELL YOU....it is truly amazing....it's like a giant heating pad. I've spent an hour each of the last three days just laying on the bed with it cranked on high, it really really helps. not to mention the fact that it's so very cool to get into a nice warm bed on a cold winter night.

I highly recommend one for anyone out there, fms or not...it's my new favorite toy.

Not much else to say, i'm not feeling overly chatty or inspired today, so I guess I'll wrap up this entry and catch ya later!

jan

Tired!!!!!

2007-12-11T16:27:00.000-09:00

I haven't written much lately, primarily because I've been dead dog tired. I go through flares with this disease, and apparently I'm in one right now. The pain has, for the most part, been manageable with meds....but tired????? oh man it's been a killer. It was to the point this morning that I had to turn the heat off in my jeep on the way to work, for fear that I couldn't stay awake. Let me tell you folks, I only have about a 10 minute drive. It's totally crazy, cuz I sleep a good 8 to 9 hours and I wake up completely exhausted. And no for those of you who are wondering, I'm not oversleeping.

I'm sure I've mentioned it before but people with fms suffer ALOT from being exhausted. Our bodies don't enter the restorative stages of sleep and thus can't heal themselves and refuel....it sucks so much to wake up and feel more tired than when you went to bed the night before.
It makes concentrating during my work day a challenge.....lol....luckily the people at work can laugh it off with me. Even that though, is a double edged sword. The main 3 people know that I have fibromyalgia, but they don't really know what that means, and they seem uncomfortable to ask. I haven't really broached it with them because I don't 1. want to push it on anyone, but 2. and more importantly for me, I don't want to sound like I'm whinning, complaining, or even making excuses. That's one of the big pitfalls with fms, is we don't LOOK sick in the least so people don't believe that we really are suffering. I think too, at least in my case, I get good at trying to keep up appearences and then just collapse when I get home, which isn't very healthy either.

It's quite a balancing act that I've gotten myself into. You can sense when people feel uncomfortable when you're talking about the disease, but on the other hand I want to increase awareness at the same time. So for right now anyways my tactic is to explain it if asked....or like now have a very personal tattoo that keeps me strong, but also allows for some sort of dialog when someone asks about it. But as predicted I'm a work in progress, and the struggles that fibro makes me face everyday, are ever fluctuating and changing. As are as evidenced here, my emotions and feelings toward this damn disease. For right now, anyways, I'm reasonably comfortable with how I'm dealing with and coping with the disease in my everyday life...but go figure....nothing stays static! poop!

that's my thought for today....may you all have a wonderful day !

hobbz

New symptom/different twist?

2007-12-02T13:59:00.000-09:00

So yesterday, for the second time in a couple of months, I woke up feeling super stiff and sore. Now with fibro I always wake up sore, but this feels like what happens when you workout waaaaay too hard and all your muscles have been taxed to the max. It's truly a different twist on the disease for me. Normally my pain is a radiating pain in my legs mostly, but also my shoulders and neck. this new pain is every single muscle in my body! Like honestly, and I feel dumb saying this, but my fingers and toes are quite painful, even my facial muscles...and it just happens out of the blue. Today it's there a little bit, but nothing like yesterday. I don't know how to avoid it, since I haven't done anything out of the ordinary, so I've just used these days as a day to do a little self care and focus on me for awhile....hmmm that part of it isn't so bad.

As I'm typing this I'm wondering if it sounds like I'm always complaining, cuz that's honestly not my intent with this blog. On the other hand this disease is relentless and it's ALWAYS present in some way shape or form. My wish is to capture these moments when they happen so that those who are fortunate enough to not have this disease, can get a glimpse into what it's like to live with fms....and two that other fibromites cand hear, see, feel that they are not alone. We all have commonalities, even if the only common thread is that fms is completely unpredictable.
does any of this make sense? This is kind of like having a conversation with myself...which isn't all bad for me....but yikes now people have a glimpse into what goes on in my mind! lmao....scarey isn't it....insert gasping laughter here....

Migraines have been another concern for me lately (yes I'm jumping all over the place)....I've had some of the worst of my life! I've started working out at the hospital, and I'm hoping that will help relieve some of this mysterious pain...and cut down on the migraines. Nothing like blinding head pain...to knock you right out.

ok.....so i'm jumping all over....and seem to be having a hard time communicating any logical sequence of thoughts....not sure why...but the fog is ever present today....which yes is another symptom....jump....bounce....jump.....hey look a turtle.....jump....bounce.....ok enough is enough.

lol

hobbz

back on track :}

2007-11-20T14:21:00.000-09:00

So I'm back on track and the pissed off me, survived to see another day lol. There's been some research on anger and how it's somehow linked with Fibro, but I can't remember exactly what it was. I want to say that the lack of seratonin in our brains, affects how quickly we get angry....I dunno. I DO know that my patience/tolerance is EXTREMELY low over the last few years, and I'd actually prided myself on being a rather patient person, in my younger years. That could totally have been a false self image however.

I'm much more easily frustrated than I've ever been before, and once I get angry it's at a much more intense level than ever before. It's all so subjective though. It could simply be the demands of ever growing responsability at work, becoming a wife, and parent....or on the other hand it could be that I resent this disease and have no tolerance where it's concerned. I just know that my anger is definately different than it's ever been before, and I've heard others echo the same concerns.

That's the hard part with fms; it's so far reaching into every aspect of your life and your health, you just don't know what's normal and what's not. I know that before my diagnosis, I was convinced that all the pain that I felt was simply due to getting older and not being in my 20's anymore. But let's get real here I'm only 38, which in my opinion, for what it's worth, is just not that old.

There's all these things about my body that have just become normal to me, and I don't realize that they're not "normal" until I hear someone else ask about it, or even worse: when I'm talking about it to someone else that doesn't have fms, and they are looking at me like I'm from outer space. lol yikes! For instance I have random muscle "jerks" "spasms" "ticks" i don't know what you would call them. When I'm sitting still or especially laying down to go to sleep, my leg or arm or both will all of a sudden jump. It's kind of like those dreams you have of falling when your almost asleep and your whole body jumps, except it's just in my legs and arms. Well come to find out, someone on Fibrotalk posted a question about this very symptom, and tons of people report the exact same symptom. It's weird.

This week so far is going pretty well though. I'm really tired but not in bad pain, which I count as particularily good. I've started going to the gym at work....today was my first major work out. I did cardio and lower body weights, so we'll see how I feel in the next few hours. Exercise is supposed to help curb the symptoms of fms, but exertion causes undue pain and fatigue. The key is to get to the point where the benefits of exercise start out weighing the negative side effects. I'm remaining optimistic at this point.

I've lost 30 lbs in the last couple of months, but have kind of stalled so upping my exercise is the next stage to losing more weight. It's definately an uphill battle. I committed this year to getting my body back on track and as the year draws to a close, I am definately happy with my progress.....just keep trucking on, as they say!

later!

hobbz

2007-11-15T16:53:00.000-09:00

So I was in the middle of what I thought was a really good post....and then life hit me square in the forhead....and what happens, when life stresses you out????? Your damn disease kicks you in the ass...............................I absolutely hate that a simple stressful event can cripple me.....so I'm off to lick my wounds....

welcome to fms folks

h

oops on comments

2007-11-14T14:03:00.000-09:00

So I just, yes only just now, realized that the settings for my comments, prevented people from posting anonymously....yup I'm a goober! lmao....that has now been changed so comment away folks.... isn't it just like me and my fibro fog to space this one out.....oh well, i'll do better next time i'm sure or NOT! lmao

hanging my head in shame....
hobbz

Sooooo I did it! blink blink

2007-11-14T13:26:00.000-09:00

So I decided to go ahead and get the tattoo! and I absolutely LOVE IT, I know it probably seems strange to most of you but it works for me. I ended up getting it on the inside of my left wrist...

A couple of people brought up the same issue that aplseed did, about not wanting to be seen as just the disease. For me though it is a way to remember that it is just a disease and it's part of me like a tatoo, but it's a long way from who I am as a whole. I'm not sure why it symbolizes that for me, but it does, and I guess I'm the only one who has to like it and live with it....and I do. The minute it was all finished I knew I'd made the right decision. It's a huge part of my life and part of the problem with this disease is that we don't "look sick", we look perfectly normal and healthy, so people can sometimes jump to the conclusion that it's "all in our heads" or that we just want the "drama" of it all.....which is sooooo far from the truth.

The most positive change for me, has been to start focusing on raising awareness, and not being afraid to admit to/or let someone else know that I DO have a disease and it affects everything that I do. I'm proud to be the person I am, and I'm proud that I have found a positive outlet to focus on with my FMS as opposed to always looking at the negative and how it takes away from my life. Writing this blog and wearing my tattoo with confidence allows me to work WITH my disease and not AGAINST it.

So for those of you who don't like it or think it was the right thing to do, I very much appreciate your point of view and thank you for helping me to explore all these things before I got the tattoo, but know that it's the right fit for me and that's all I can do right now. ...the next right thing for me!

love you all!

hobbz

awareness

2007-11-05T14:39:00.000-09:00

So my goal is to not only promote awareness of Fibromyalgia, but also for me to reach a point where I'm comfortable with the fact that FMS is part of my life, but to remember that I am not
FMS. Does that make sense? I have it and I live with it and I'm even impacted by it almost every minute of everyday.....but that doesn't mean that it's taken over and I've lost me. I'm still the same person I was pre-fibro, I just have more hurdles to jump now.

This perspective is easy to keep when I'm feeling good, however when I'm over tired, in chronic pain, and my senses are on overdrive it's hard for me to keep that positive perspective. I wear one of those rubber bracelets ( like the yellow LiveStrong ones), the main one for FMS is purple (cool color) and it says "Fibromyalgia is real" on it. My newest idea though is to get a tatoo of the purple ribbon that symbolizes FMS for me. I know that alot of people feel that tatoo's aren't the way to go, but it's a way for me to remember, that while FMS is a part of me....it's not all of me, and it also opens up for conversations about what FMS is, with others.

I'm just kicking around the idea right now, I have Thurs/Fri off this week so I'll see what the possibilities are then. It may just be my birthday gift to myself....who knows. I'll keep you posted.

My feet haven't gotten any worse with my new shoes/orthotics so I guess I'll count that as good. Other than that my symptoms have been reasonably mild the last week or so. The weekends are always a time for me to catch up on my sleep...and let me telll you I take advantage of that.

I'm not feeling real chit chatty today so I'll post again later this week.
To all my fellow fibromites....I hope you are all well, and if not.....at least taking care of yourselves!

hobbz

a quickie note

2007-10-29T19:56:00.000-08:00

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

CONGRATULATE APLSEED

ON HER NEW.....DESK JOB!!!!

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!!!!!

jan

Didn't make much difference did I?

2007-10-28T15:18:00.000-08:00

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 on.....so 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

Ick Ack Oop!

2007-10-25T17:03:00.000-08:00

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 say....one 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....

THIS SUCKS!

hobbz

National Fibromyalgia Association NFA

2007-10-17T14:01:00.000-08:00

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 fibromyalgia...my 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 overwhelmed...it 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 bad....it 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
fibromites!

hobbz

Still surprised

2007-10-14T16:31:00.000-08:00

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 truck...lol....now 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?

jan

Going with the flow

2007-10-06T20:28:00.000-08:00

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 afternoon...it'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" sleep...my 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 snore....it'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 body....you 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 better....lol

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....

hobbz

To thy own self be true!

2007-09-30T20:21:00.000-08:00

Believe it or not I've found that even in the quagmire that is Fibromylagia, one can find a blessing, of sorts. This disease is unrelenting, it doesn't care if you're really busy, have to get a million things done, or even that you've planned a fun activity. Basically it strikes when it wants to.
The worst bouts though, can be brought on by stress, and for me this is very much the case. Within about an hour of getting angry, upset, arguing with family, staying up a little too late, pushing myself just a touch harder than I know is safe.....the pain will hit my body. Which sucks, but what it's taught me is that I have to put myself and my health first! I've always tried to put everyone else in my life first, and not ask for any help when I've needed it.
The same can be said to be true with my disease....I haven't talked about it much to others because I've not wanted to look vulnerable, weak, disabled etc....But all this has been to my detriment, because the more I work towards being as healthy as I can be, the more my body reminds me that I must put me first!
So this is a good thing, I have my ever faithful companion FMS at my side to remind me to slow down, rest, ask for help, be peaceful....whatever is needed at the time. I heard recently a lady that was speaking about feeling like it was her job to take care of everyone else in her life.....she came to the realization though, that it wasn't that she was necessarily "taking care" of them, but rather "focusing" on them.
This thought really rang true for me...it's easier to focus on others so that I'm not left worrying about me. Where do you learn to make yourself a priority? I must have missed that class...or memo...or newscast what ever it was.
So my focus this week is to make sure that I get what I need to get done, done, and that my family is taken care of...but not at my expense, and more specifically my health's expense. I can't be a good employee, wife, mother, daughter, friend, sister, etc etc unless I have my best self to put forward....so that's my goal for this moment....and hopefully the next moment....I'll keep you posted.....

take GOOD care of YOU!

hobbz

yet another rainy day

2007-09-25T19:35:00.000-08:00

Do any of you notice how hard it is to get out of bed when it's raining???? wow my bed was soooo comfy this morning. Worried about back pain and wrist pain today. My fear is that my I'm gonna develop carpal tunnel in my hand, and not be able to work in my current job. That's what happened with my feet. I'ts only been 2 months and now I'm getting all the symptoms.....hmmmm how very frustrating.
splinting and icing but doesn't make much difference yet.

i'll keep ya posted....off to bed, I'm exhausted!

j

Question of the day????

2007-09-22T21:34:00.000-08:00

So my question of the day for all to answer and interpret any way you choose.....

"How do you know when enough is enough?"

simple yet oh so powerful and difficult.....let me know your thoughts.

j

the dreaded symptoms

2007-09-19T15:40:00.000-08:00

I'm kind of letting this blog take shape all on it's own, since I don't really have it mapped out. It occured to me today, that my goal is to increase awareness/understanding of FMS and that if I'm going to do that I should probably define the disease/syndrome itself.

I recently got the book "Taking Charge of Fibromyalgia", it gives a good outline of symptoms/criteria for diagnosing the disease so I'm going to borrow their good work...lol

their definition reads: "history of widespread pain for at least 3 months...Pain on the left and...right side of the body. Pain above the waist...and below. This includes: cervical spine or anterior chest or thoracic spine and low back pain"

Most common symptoms listed are:
-muscle pain
-tender points
-sleep disturbance

listed as frequent symptoms....but in my opinion they are common symptoms....
-extreme fatigue
-subjective swelling
-joint pain/restless extremities particularly legs
-neurological symptoms
-headache
-irritable bowel/bladder
-morning stiffness
-raynaud's phenomenon
-memory problems
-difficulty with concentration/short term memory
-decreased painful sound threshold
-dizziness/vertigo
-heart palpitations....

Now to be fair the list goes on for pages, I'm just highlighting what seems to me to be the most frequently mentioned symptoms when I have conversed with other's. These definately give an overview of my personal symptoms.
When typing them it seems like an extremely long list! ick...the sad part is, that it is just the basics of the disease, as it affects everything in your body and how you function in general.

I'm so scared that by posting these types of things that I will only scare more people off. I guess what it comes down to is that I'm pretty uncomfortable with sharing vulnerable parts of my life...it's one thing for Bret and Lee to know the dirty truth of this disease and how it affects me, but it's a totally different proposition to be posting it on this blog with no control over who sees it.
But....
that's the whole point right? If I don't take the risk, then I can't expect the general public to understand this disease let alone how it affects those of us who have it.

So I'll leave you with the plea to take this information in, and not be judgemental, rather supportive of anyone in your life who has FMS. Second, PLEASE leave comments so I know that this is at least reaching more than just "aplseed" and myself....lol....if nothing else it's proving to be rather cathartic for me....(blink, blink, blink)

jan/hobbz

2007-09-17T16:00:00.001-08:00

Thank you to all who have written me awesome notes of support and encouragement on the FibroTalk message boards!
Without you guys life would sure be alot scarier. It is absolutely amazing to find a place where EVERYONE knows exactly what you're talking about. Sometimes when I try to explain how FMS affects me or makes me feel, I get the feeling that either the person is uncomfortable hearing about me being "sick" or that they just don't get it.
On the flip side though I don't know how anyone really could get it without feeling it. My immediate family gets it (for the most part) because they live through it with me daily...but people that are more removed don't really understand....which is ok too.

I'm rambling, but my point here is...that FibroTalk is a life saver! Thanks you guys!

hobbz

in response to aplseed...

2007-09-16T09:58:00.000-08:00

You are so totally right aplseed! Most of us are not in a position where we are able to survive financially, if we didn't work, or went on disability. There are so many people that are just "sucking it up" and going to work everyday. The problem is that EVERYTHING suffers when we do this.
1. it's impossible to do our best in our jobs
2. once we get home, we are essentially useless
3. for me anyways, all of time off is spent sleeping and recouperating so I can make it through the next day of work.
4. we can't be totoally present for our families
5. my social life sucks because, even when I do reach out and make plans to do something, unless it's spur of the moment I can't guarantee (sp?) that my body...let alone my brain will be healthy enough to follow thru.

I know that my husband struggles too, he wants so much to help, but he can't do it all himself, when it comes to cooking, cleaning, etc. I'm certainly NOT the person I was 10 years ago, and while some of me is better, I'm certainly lacking my same over achiever, go get it attitude....

i'm right there with you....I wish there was a quick and easy cure.....on second thought it wouldn't even have to be quick and easy.....just simply a cure.....

hobbz

it's all in the perspective...

2007-09-15T19:11:00.000-08:00

Sooooo, here's the thing....everything we experience and do in our lives, all boils down to perspective. If I choose to believe that all is bad and that life is conspiring against me. Well....then....frankly it does. So the key for me it seems, is how to shift the frame through which I view the world, and subsequently view my illness. When I last wrote everything, big or small, seemed overwhelming and insurmountable. What I have to remember, ( I think), is that whatever feeling, view, belief that we are experiencing in this very moment...is simply that...just a moment in time. Who knows what the next moment will bring.

We can ALWAYS be worse off. Conversely, the opposite is true, we can always find something good to focus on as well. All these theories seem so simple in concept, but in the moment in the reality of a situation, it seems a daunting task to remember to step back and look at the whole picture.

Fibromyalgia strikes in the moment, and you never know from minute to minute how you are going to feel. It's easy to get stuck in the circle of always waiting for the other shoe to drop...this disease can have a cruel sense of humor. I think it's key to have time alone each day to meditate, center yourself, pray...whatever you subscribe to....to focus on the big picture and to be in tune not only with your body, but to make that body connection link up to your brain too. All too often I've thought myself into a problem that didn't/doesn't even exist...what good is any of that????

All I know is that typing this and putting it out there for anyone to see, is terrifying and freeing all at the same time...I've always taken pride in my ability to hide what's really going on with me. I never want the whole truth out there, but one of the biggest problems with having this disease is that sooooooo many people are completely ignorant and unaware of it's existence. You can't tell by looking at someone if they have FMS, and lots of people have been judged and told that their dramatizing or making shit up for attention. It simply isn't true! This disease takes over and has some devastating effects, they just aren't visible....so it's my belief that even if only one other person reads this....at least I've spread the word.

So to anyone that reads this...just take note and understand that this is a real condition, and it is life altering, but it doesn't have to be life halting...to my fellow fibromites...stand strong and try to keep the big picture in the frame...don't zoom in!

j

OFF TRACK I GO.....AAAAHHHH

2007-09-12T18:39:00.000-08:00

So today is one of those days! Anyone with FM knows of what I speak. I'm going to preface this blog with the fact that I'm ranting; so it probably won't make a lick of sense, but for me, that's what this blog is for. A place for me to share my good, my bad, and my ugly!

Over the last 5 years I've slowly been scaling down my employment in a few ways:
1. I've changed how physically demanding my job is. I've gone from EMT, to Respiratory therapy, to desk job in a NICU, to desk job in a calm and quiet dept. in the hospital. All of this inspite of the fact that I absolutely LOVE working with medical emergencies.
2. My hours have also changed dramatically. 24 hour shift to 12 hour shift, to 10 hour shifts, to five 8 hour shifts per week, to four 8 hour shifts/week, and now finally to five 6 hour shifts per week.
3. I've gone to high stress, adrenaline pumping work to, answer phone calls and log them (maybe a tad simplified, but you get the idea)

Now at the time of each change I've come up with ways to convince myself that I wasn't doing it because I have FM, but rather the schedule is better, or the hours work with my son's school or whatever, crap I want to feed myself with.

The brutal and honest truth is that my body can no longer handle stress of any kind, AND it most certainly will make me pay, if I work more than about 25-30 hours of even the most calm and mundane job, a week. So all of this is leading to a point...really it is.

Starting this past Monday (oh my god, that's only 2 days ago), one of my co-workers is off work for 6-8 weeks to recover from knee surgery. So I am doing her job and my job, which has taken me to 8 hour days, and I'm not even getting everything done. So now it's day 3 and I'm a mess, physically, emotionally, and spiritually. I hurt so bad I can't even stand it! The fibro fog has hit my brain like a brick wall ( nothing in nothing out), and my tolerance for ANY LITTLE THING has gone out the window. I can't sleep, eat, think, rest, coexist....i'm pretty much beat up. I hate the fact that I've become this pathetic...I used to be able to do anything I put my mind to, and now....well,....what? I dunno? I feel lost, let down, angry, frustrated...blah blah blah.

It is so defeating to not be able to use your mind and body like everybody else. Like the body I had ten years ago...i can't even describe what it's like to be trapped in this shell. I know there are people out there that have way bigger challenges, and medical issues; but by the same token, this is what I live with, day in and day out.

you know how you feel when you have the real icky flu, you ache all over and it hurts to have a blanket on your skin...right now that is multiplied by 10,and you get how I feel physically. I won't even get into my lack of brain function.

I just want to be normal again for one day! please....please....please....
it just feels like there's no point to any of this, but I have to work, and I'm not bringing in enough money to help support our family...what is the answer????

the answer is there is no answer, I just have to suck it up and deal with the hand that was dealt to me....which of course I will do....just cuz that's what I do? is there really any other choice? nope?
so to the blogging world i bid you a restfull night of sleep, if I can't have it somebody else sure should....lol (pathetically)

j