Monday, December 14, 2009

What a month!

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

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

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

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

Love you all and happy holidays!


Friday, October 30, 2009

Life keeps trucking along

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

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

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

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


Friday, October 16, 2009

OK so it's been forever....

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

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

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

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

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

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

I'll keep you posted

Sunday, September 20, 2009

Roller coaster ride

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

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

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

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


Wednesday, August 12, 2009


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

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

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


Thursday, July 30, 2009

A change of perspective....

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

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

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

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

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

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

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

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

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


Tuesday, June 16, 2009

Coming to grips with a chronic illness

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

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

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

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

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

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

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

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

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


Saturday, May 30, 2009

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

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

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

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

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


Tuesday, May 26, 2009


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

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

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

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

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

i'll keep you posted on that one.


Thursday, May 21, 2009

must sleep

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

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

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


Tuesday, May 19, 2009

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

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

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

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

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


Monday, May 4, 2009

Spring has finally arrived

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

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

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

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

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

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

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

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

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


Sunday, March 29, 2009

Ups and Downs

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

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

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


Saturday, March 21, 2009

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

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

In recent months I've come to realize that the whole idea of going it in the world alone, is waaay over rated....ok you can stop laughing really....stop....I'm serious. All my life I've preached the virtues of existing in this universe in a truly solo adventure. I've never been a big fan of religion (under statement of all time), and have believed that Those who rely on an outside force for peace and serenity are somehow weak or "less than"....

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

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

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

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

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

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

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

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

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

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

may this find you all well and feeling loved!


Friday, March 13, 2009

Wow back from a break

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

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

until then....

Saturday, February 14, 2009

I'm just not sure....

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

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

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

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

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

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

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

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

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


Monday, January 26, 2009

finally recovered from the flu...

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

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

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

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

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

take good care!