Monday, July 25, 2011

new blog site

I've decide to create a new blog site

this new site will address my 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

Saturday, July 16, 2011

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 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 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 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!


Sunday, May 8, 2011

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 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......


Tuesday, May 3, 2011

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 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...


Thursday, March 31, 2011

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 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

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


Tuesday, March 15, 2011

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 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!


Tuesday, March 8, 2011


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 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...