still searching for peace with fms

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

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

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!

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

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

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

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!!!!

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!

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...

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...

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

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

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

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

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

hobbz

Invisible Illness...indeed!

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

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

hobbz

crappy/scrappy

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

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

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

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

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

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

crap! hobbz

Ok so a bit of a pause between posts

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

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

hobbz

Home from surgery

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

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

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

hobbz

How very cool!

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

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

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

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

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

hobbz

Perspective

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

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

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

until this weekend......

hobbz

Better sharpen that knife there doc!

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!!!!

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?!!!!!

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

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????

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"

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...

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....

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

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!

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

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????

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...

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!

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

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....

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)

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

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?

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

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