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fickle fibro

Random tangent before I get into what I was going to write about: The word “fickle” always makes me giggle. Why? It all started when I was a teen and my mother, sister and I were at my grandparents’ place. We were going through old photos, I think. My grandmother  was talking about all the different boys my mother had dated as a teen. (I say “all” because to me, as a dateless teen, it seemed like a lot, but I think it was something like three, to be honest.) I can’t recall all the conversation but I do remember learning about the word “fickle” that day. I think I asked something like “wow, why did you have so many boyfriends?” and my mother replied “I guess I was fickle” (or something like that) I said, “What does that mean? Easy?”

HA! Oh, little teenage me and your innocence & sass, you still crack me up.

To this day the word fickle is a joke in our family. Heh. Sorry, but that popped into my head as I started this post.

So now onto the real reason I wanted to blog today. Just consider that up there the 30 second ad spot before a video you might watch online.

My medical leave comes to an end this weekend. As of Monday I’ll be back out on the ever exciting picket line and praying that the stress of the physical activity doesn’t cause another flare up of pain. I think I should be mostly ok because I am nowhere near as bad as I was BEFORE the strike started. I think the picketing just broke my ability to tolerate the severe pain I was in all summer. I’m feeling about 90% back to normal now and this makes me happy. I was pretty sure that my med leave would be over before the strike ended, though many thought we’d be back to work by now. I’ve realized that optimism just delivers nothing but disappointment, so I have stopped that fruitless endeavour. The people who run the university right now are not about to be kind to those of us who can hardly make ends meet with our tiny salaries. They claim there’s too much economical strife right now to give us a salary increase, yet they make over $400K(PLUS) a year themselves, so I guess the strife is that they’d like to keep their cushy salaries and 3-5% increases a year.

Again, not my reason for blogging. Sorry.

FIBROMYALGIA! That’s why I’m writing! I wasn’t sure that the pain would ever get better, I’ll be honest. By the start of November when I thought I was feeling better and then the regression until about under two weeks ago, I was convinced that I’d be in so much pain I felt nauseous and be useless the rest of my life. Thankfully, it’s better. In the first month my Rheumatologist had me try Lyrica. I hated it. I got lost two blocks from my house while driving one day while on 50mg and that was it. I told my doctor I wasn’t taking this anymore. He said I had to do something and referred me to a pain clinic. I spent much of November waiting for the clinic to call me for an appointment. Imagine my surprise when the Rheumatologist office called me last Wednesday and said “we’re starting a new clinic here and we’ll get you in Friday morning. Otherwise it’s an 8 month wait.” Since I was feeling better I wouldn’t have minded the wait, but I appreciated my doctor’s insistence that I get my foot (body?) in the door.

I met with the nicest little British woman who also happens to be a Rheumatologist AND is currently studying fibro. I got to fill out questionnaires and give my consent to be part of a study. THIS MAKES ME SO HAPPY! I might be switching from my current nice doctor to her (if he’s ok with it, I know I am). I would LOVE to be followed by someone who’s actually studying this syndrome to find out more about it. She agreed with me that I don’t have to take more meds, but there’s one she’s putting as a back up if things get bad again. She also agreed with me that hormones seem to play a part in the ailment (to which my current specialist said “I don’t deal in hormones”). We looked up my most recent blood panel and like always, everything is fine except my inflammation one (CRC?) is off the charts. For no reason. She called me an anomaly. HA! Oh, Dr. Nice Lady, if only you knew how much medical mysteries and I go hand in hand. She’ll learn though. 😉

So stress and anxiety are likely the cause of my most recent flareup. Which, ok, I get. But WHY?! WHY is my body reacting this way all of a sudden (by sudden I mean since 2008) when it never did before? WHERE DID THIS COME FROM? I explained to her that part of what makes this worse for me is not knowing WHY and HOW it started. It’s not like I have had this reaction to stress since I was a kid. That used to be all digestive related. Now that the digestive thing is pretty much taken care of (Thank you, BodyTalk) why are my tendons getting involved? Ugh. Why is it always something?

Even if I feel all stress-free and un-anxious, I guess my body is just absorbing it all and then attacking me. Why is it if I think I am handling something well I’ll deal with fallout afterwards. Why am I lying to myself? If I think “oh, this isn’t so bad” and then have a flareup a month or so later – WHY? I’m not denying things, I’ve been so proud of the way I have handled so much crap over the last few years. I am not breaking down. I am not having panic attacks. I am not feeling like the world is coming to and end and I need to end my life. I am just rolling with it! I am handling it without overreacting and I have been so proud of myself for doing that. And yet, it seems to be all an act I guess because my body is still reacting.

That being said I have absolutely no idea why something stressful could cause all of my tendons to swell and become inflamed. IT MAKES NO SENSE!

Ugh. I am so sick of this. I am also sick of how fickle (heh) this ailment is. One day I’ll be on the top of the world and have no aches, pains or fatigue. The next day I drop almost unconscious for 3 hours after a 30 minute grocery excursion. Or the day after I can’t get out of bed because my body has seized up and is so stiff I feel paralyzed. This is a stupid, stupid, frustrating illness that can’t just be “all in my head” as so many people claim. I have been through serious, clinical depression before. I never hurt physically. This is just STUPID.

I suppose I am now hyperaware of my body’s reactions to things. I have been keeping track of symptoms pretty much daily. I don’t want to live in constant fear that tomorrow will dawn with pain so strong that I want to throw up. How am I supposed to figure out what triggers this? There is stress everywhere and I can’t just not do things. I admit having the last 2 months off without having to worry about work (though I did worry about money) and just get to relax and go about my day at my own pace, truly did help. It was a sort of mental and physical rest that I guess I needed. Even when I have taken vacation I have checked in at work. This time I couldn’t since we’re all locked out. It was a nice break from always worrying about what’s going on at work.

We’ve likely got at least another month on the picket line before anything helpful happens in regards to the strike. I don’t see us being back at work before January and with the way things have stalled, that January dream would be a miracle. I have no idea how my body will react to the picketing this time around. I’m not as stressed and not in nearly as much pain as I was prior to September 1st, so I am hoping that it will just be regular physical activity reactions to this. I don’t want to be off on leave again (though I would like to not have to work for a living at all. THAT might actually help with the stress factor. heh. Come on winning lottery numbers tonight!). Being home, alone, is not the best thing for my mental health.

I’m just tired of not knowing how my body will feel every time I wake up. It’s unsettling.

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