A Song for Rachel

As I’ve explained previously, Rachel is what I have named my Fibromyalgia, and in a moment of anger towards Rachel for how she has negatively changed my life and robbed me of so much, I decided to listen to Christina Peri’s song, “Jar of Hearts” to help release some of that anger.  It’s a great song that very nicely expresses anger in such a way that any kind of painful anger can be soothed by the song’s emotive expression.  As I cathartically listened, it occurred to me that the song could very easily address Rachel, rather than the heart braking presumably ex-boyfriend of Christina Peri it is actually directed at.

The lyric, “I’ve learned to live half a life and now you want me one more time” is what specifically motivated this connection for me.  I really have had to lead half a life, and every time I have a flare-up, every time I have another pain, every time someone inadvertently reminds me of something I have lost or of the burden I have become, I feel like Rachel is coming for me one more time, again and again and again.

Obviously not every lyric relates to Rachel, since Fibromyalgia was clearly not the motivation behind the song, but so much of it does fibro-hit home so perfectly, and I think it makes for a good “Eff you, Fibro” anthem, particularly when it’s fibro-condensed as follows:

“I have grown too strong to ever fall back in your arms.
I’ve learned to live half a life and now you want me one more time…
 It took so long just to feel all right.
Remember how to put back the light in my eyes…
You don’t get to get me back…
 Who do you think you are running ‘round leaving scars…
You’re gonna catch a cold from the ice inside your soul,
so don’t come back for me, don’t come back at all.
Who do you think you are?”

I spend most of my life now making an effort to not think about the gory details of the state of my crippled being.  This is no easy feat, since I also have to spend most of my life being aware of avoiding pain, and planning things out, like taking pre-emptive Advil before attempting to go to a family function, avoiding places that have stairs without elevators, or stretching before attempting to do just about anything at all, such as starting my day.

I have to focus on things that normals do with so much ease that they do the things without ever thinking about it, like focusing on how I’m walking or how I’m stepping onto a curb or a small step (since, at the time of this posting, I can’t even attempt a normal sized step without holding onto someone).  I have to consciously work toward increasing function, and when I do increase in function, it inevitably means that I will have to endure more pain, sometimes temporarily, sometimes not.  Despite this, even the tiniest improvement in function is an enormous triumph for which I am endlessly grateful.  Things so easy for normals, like putting on one’s own pants one leg at a time, become the biggest triumph in several years – possibly the biggest triumph in my fibro-life so far.  While this triumph comes equipped with increased pain every day, the joyous triumph outweighs the increased ongoing pain.

I thusly try to focus on the positive things in my life, the improvements, and the hope for more improvements.  But then people innocently and/or well meaningly say things that normally don’t bother me but sometimes do, like when there’s a certain tone in their voice, or there’s a certain context, or (most likely) when I’m in a certain mood.  They say things about their own life (“I don’t’ have time like you do, I have a job”), and they say things about me (“You don’t have to live with your parents” “Yeah, I do, I can’t care for myself…”  “So hire someone”).   They say tings that make me feel like they don’t understand what I go through every day, even though these are the people who are supposed to understand.  They say things that force me to think negatively -- about how crippled and broken I am, what an enormous burden I am to my family and the world, and ergo how crappy my life is.  These thoughts then have the power to push me into the black hole of self-piteous despair.  I have to climb out quickly each time so that I don’t fall too deeply because if I fall too deeply down the big hole of depression, I don’t ‘know if I could get out….What am I saying – of course I could get out, but it would be hard.  I just have to use a few extra spoons to either deal with the negative thoughts or positivize them as needed.

I’m glad Glee had that episode (“Original Song”) where Rachel (the fictional character, not my fibromyalgia) used her emotional pain to write an amazing song (“Get it Right”), for that episode crystallized what I already knew and demonstrated here.  My emotional pain here has turned into this blog posting (okay, so it’s not amazing and was written in two bursts separated by months followed by a non-emotional proofreading).  The writing has helped me to get over and hopefully past the anger and emotional pain, at least temporarily, such that I can now move on to more joyful music, like Lady Gaga’s awesome Born This Way (the whole album, not just the song).  Of course, Gaga is a(nother) artist who probably understands the plight of the chronically pained, since her mother has Lupus, as she mentioned in an interview I saw on the TV some time ago (I think it was on Larry King Live).  I love Gaga, but alas, this blog posting has fallen off topic and so it will end now (you might think the proof reading I spoke of would have fixed this, but such was not meant to be).

A Poem, By Rachel (Fibro-Girl’s Fibromyalgia)

My evil heart brims with hatred.

Upon Fibro-Girl and all who surround her, I tread

Heavily with my fat, smelly feet

Such that I shall never be beat

I pummel Fibro-Girl with glee

And Fibro-Girl hollers, “Leave me be!”

But all can certainly hear my laughter

Or so I assume, for you see

You should know I’m insane, before as well as hereafter.

I am not a poet

Nor is Fibro-Girl, ya know it!

Neither she nor I

Has taken a poetry course

And that is probably why

This poem lacks poetic force.

I’m not sure that “force” made sense in the above stanza

But I used it anyway, because it rhymed with “course,” bonanza.

There I did it again.

I think this poem fizzled when

I got all meta-poetic

So I think it’s now time for this poem to end, and thus it won’t be very epic.

Important Message from Fibro-Girl:

Please don’t like Rachel (my fibromyalgia).  Please remember that she is evil, and not the good, fun, oppressed, deserving-of-pity, or misunderstood kind of evil, but the psychopathically evil kind of evil.  If there is anything positive about Rachel, it was really me, Fibro-Girl.  Naming my fibromyalgia carries the risk of making her/it likable, so please be careful and don’t do that.  Thanks! :-)

Love,

~Fibro-Girl

Did Fibromyalgia Save Me?

The following was written in February or March of 2010.  I neglected to revise and post it until now, after reading this Esquire article and Roger Ebert’s response to it.

**DISCLAIMER: The following are just my opinions and/or my experiences.  Do not use anything in this blog to justify avoiding medical treatment or to justify anything else.  Talk to your healthcare provider and see my other disclaimers on the right.**

I was shocked to see what happened to Roger Ebert.  I didn’t see the Oprah episode first – I saw this article about it.  I had no idea that Roger Ebert had thyroid, then salivary gland, and then jaw cancer, that the surgery to remove part of his cancer-ridden jaw and the radiation caused his carotid artery to burst, or that he was left without a jaw and without a voice after his doctors saved him from bleeding to death.  I didn’t know that other parts of his body suffered as doctors tried unsuccessfully to reconstruct his jaw.  My heart broke as I watched this clip.  I actually didn’t realize he hasn’t been on TV in four years.  Four years ago…I guess that would be 2006; my fibromyalgia started in 2007, so maybe this was all coming out when I was in too much pain to know anything, or maybe it was kept quite, or maybe I was living in a cave at the time.  Anyway, as sad and heart breaking as it is to see what’s happened to him, it’s also heartwarming to see that he remains optimistic and enjoys his happy life, and that, thanks to CereProc, Roger Ebert can have his own voice back.  It’s wonderful to see that he has survived, and continues to have his voice heard.

A few months before my Fibromyalgia started, one of my doctors felt a bump on my thyroid.  The non-invasive tests couldn’t determine for sure whether the bump was benign or not, so, exactly two days before my Fibromyalgia started, I went to see the surgeon about the removal of Bobby.  That is my thyroid tumor’s name; it is to be spoken with a British accent.

Normally, I’m terrified of any kind of surgery; I’m really uncomfortable with the idea of being sliced open in any way.  Because of that fear, other than my wisdom tooth removal, I have avoided every other surgery any of my doctors have ever suggested or strongly encouraged (I think there were only two).  The Bobby-removal was different; my doctor told me I had to remove it because even if it’s benign, it could grow and because of its location, that would not be good, I assume because it could block things that I enjoy, such as eating and breathing.  I was fully convinced that this surgery wasn't one that I could avoid when the surgeon mentioned that there was a 30% chance that it was cancer.  Also helpful in convincing me was the fact that this particular surgeon was willing to do the surgery with a local anesthetic, which eliminated my fears of general anesthesia.

After my Fibromyalgia symptoms began, it became clear that my body couldn’t possibly handle surgery, so my doctor told me we could wait, so we did.  When I went to my next checkup a few months later, that doctor found that Bobby had miraculously shrunken a little.  They didn’t believe my tumor could shrink.  But it did.  So the surgery was no longer urgent -- the cancer risk was either gone or almost gone (I can’t remember which) since it had shrunken.  A few months after that, it shrunk s’more.  It has remained the same shrunken size since then (knock on wood), but that’s ok, it shrunk enough to let us all know there’s no need to remove it now (if it grows enough to cause problems, I assume that would change).

When Bobby shrunk, I realized that my Fibromyalgia, as horrible as it is, had saved me from surgery that I fear so very much.  I wondered if my body decided to do something drastic since my brain had become willing to have it sliced open; it was as if my body had to buy some time.

After seeing what happened to Roger Ebert, with his surgery going awry, I feel even more strongly that Fibromyalgia had not only saved me from surgery that I fear so intensely, but it might have also saved me from a lifetime of a different kind of disability.  As I mentioned in a previous blog posting, I’m also legally blind (from birth), so either way, another disability would have piled on struggles, and I imagine that Fibromyalgia might be a lesser evil than what could have arose.  Of course, if I’d had the surgery and something went wrong, I still could have gotten the Fibromyalgia on top of that.

I’m grateful to G-d, to my body that has often saved itself, and to the Universe, that I didn’t have surgery that could have potentially caused so many other problems.  The surgeon who would have performed the Bobby removal is probably a great surgeon, but I can only imagine that a celebrity like Roger Ebert probably had a great surgeon as well; there are always risks with surgery.  I’m really grateful, even to Rachel (my fibromyalgia’s name), that I didn’t have surgery at that time.

Beyond the obvious irony of one horrible debilitating syndrome saving me from other terrible things that could have been, there is further irony in Rachel saving me from Bobby-removal.  I’ve read that it is thought that Fibromyalgia can be triggered by a physically or emotionally traumatic event, and I believe the impending removal of Bobby and part of my thyroid gland might have been the emotional trauma that might have summoned Rachel.  As I mentioned, it was exactly two days before the onset of my Fibromyalgia symptoms that I saw the surgeon and became fully convinced that I should have the surgery, and became aware of the 30% chance that Bobby was malignant.  I should have been freaking out – I should have been an emotional wreck.  But I wasn’t – I couldn’t even cry (despite my attempts).  It was too much to handle, so I detached, I didn’t feel anything, at least not as strongly as I should have, and normally would have.  My Fibromyalgia symptoms began with what appeared to be a terrible (unknown) viral infection (based on how my body reacted), and that was very possibly the physical trauma that helped trigger my Fibromyalgia (I’ve read that Fibromyalgia can start with a big infection).  However, I believe that the unfelt emotional trauma of a (second in two years) cancer scare and intense fears of impending surgery might have also contributed to the onset of my Fibromyalgia – the very Fibromyalgia that saved me from the surgery that I so feared and bought time for my body to confirm that my tumor is benign.  Knock on wood.

I Am Not Unique

I had been thinking about making a blog about my Fibromyalgia experiences, but with a separate Google account so it wouldn't be associated with my name at all since i don't want to publicly come out of the Fibro-closet. I thought I might call it FibroBlog, and I would make my display name FibroGirl, and i would talk about my Fibro experiences.

But fibroblog.blogspot.com and fibrogirl.blogspot.com already exist.

Not only that, but Fibrogirl was 26 (at the time she mentions her age in her blog), lives on the east coast, and seems to not want her identity known. I was 27 when my fibro began, I live on the east coast, and I also don't want my identity known. Furthermore, she named her fibromyalgia Agnes, because she needed a easy way to refer to it when she didn't know what was happening to her with all the pain and doctors etc.

As I read this, it sounded awfully familiar. Replace Agnes with Rachel and it's me.

She says she has no clue why she picked Agnes, it just fit she says. My mom points out it sounds like "agony," Mom is smart.

For me, Rachel was the first name that came to mind when, before I was diagnosed, my sister suggested I give it a name -- she meant like the name of a disease, i don't think she meant a girl's name. She suggested this because i didn't know what to call it, and i would say things like "whatever is wrong with me," or "this weird virus or whatever it is" etc. So I've been calling my fibro Rachel ever since. It's funny, because I actually really like the name Rachel, and I don't think I've ever met a Rachel I didn't like. But I really hate Rachel (my fibromyalgia).

Anyhoo, after discovering that my long-lost fibro-twin had taken fibrogirl, I thought I might use fibrogirl2 as my sub-domain. As of the date of this blog posting, it is still available. However, my sister suggested Fibrotastic, a word I believe she came up with as a result of conversation she and I had a few days before I decided to make this blog, when I said someone was "creeptastic," and she misheard and thought I said "freaktastic." We decided these were great words. I believe all of these wordtastic words was inspired by Scrubs.

Update: August 30, 2010
It seems that since this was written, wordtastic words have become quite the norm, and my explanation of the origin of my use of "fibrotastic" is no longer necessary. However, it does show that I might have been among the first few to be using wordtastic words, and I imagine I must be among the fewer for labeling them as such. Oh, I just googled, there are others using "wordtastic" but I think they are using it for other purposes and with other meanings. So, um, I'm still special and creative, or so I shall believe :-)

The original Fibrogirl's fibromyalgia and blog began a few years before my fibro started, but I didn't encounter her blog until the other day, i.e. after I (also) thought of fibrogirl, and long after I (also) named my fibro a girl's name.

I'm really disappointed about how unique I'm not. I guess this shows how humans are similar, especially when encountering similar experiences and situations, and that should make me happier since i find such things interesting.