new blog site

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

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

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

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....

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

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

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?

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

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...

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

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...

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