The Girl from the Ghetto has written a post about supporting arthritis research. Please take the time to visit her site, and see what she has to say. There are also links to contact your congressmen about supporting important new legislation.

Thanks for the information, Ghetto Girl!

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Stress Makes Me a Mess

March 15, 2008

My body hasn’t hurt this much in many moons. If I ever had doubts about whether stress exacerbates the symptoms of fibro, I’m now completely convinced.

The other day, I was invited to test for this little online job. I passed the test (which was a stressful, timed thing), and I got accepted. The “job” entails having to find, research and type answers to questions at a frantic pace. You get paid per answer. I did it for hours yesterday, just to get into the groove of it (and I made a whopping $8). Kind of hard to explain all of this, but here’s the thing. This job is a little microcosm of what a typical work day out in the world is like for me. I really enjoyed doing it. I love the face pace, the stress, the excitement of learning new things, but by the time I went to bed, my body was shrieking in pain. I woke up in the middle of the night with more areas of my body hurting than I can remember– the soles of my feet, my heels, hips, legs, shoulders– there was almost no area that wasn’t in excruciating pain. I could barely walk. Today’s not a whole lot better.

I dislike it when I whine and complain, but here’s my point. For me, the correlation between stress and fibro is undeniable. I stayed awake thinking about what a huge lesson I’d received about how all of this works. Stress is a demon for those of us with fibro– at least it is for me. It seems that since stress is what intensifies the pain, relaxation and meditation should ease it. But the catch with this is that, although I sometimes have a bit of control over how bad the pain gets (by staying out of stressful situations when possible), I have absolutely no control over relieving it once a flare hits. I can’t seem to undo the damage.

Lesson learned. Ouch.

I hurt. Everywhere. It’s not funny anymore. This flare has lasted waaaaaay too long. I was lamenting to another blogger (Little Miss, who has an excellent fibro blog) that even the weight of my blankets have been causing pain when I sleep at night. Forget the fact that I can hardly sleep in the first place, what with my brain waves jiggling at about 200 miles per hour all night long, this new development strikes me as sleep disturbance overkill.

BUT….I was going through some moving boxes today (yes, I’ve lived with Tom since July, and have yet to completely unpack), and I found my old friend, my memory foam pillow. I used to get excited by attending a rock concert, going out to dinner or  traveling to new and exotic places (like Indiana). Now, the thing that brings me more joy than the prospect of having Antonio Banderas standing nude on my doorstep is a damned pillow. I bought it on Overstock.com a few years ago, and it is the most comfortable, wonderful, smooshable item I’ve ever owned. Tom is all of those things too, but technically, I don’t own him.

I can’t wait to pretend to sleep tonight!

A Good Read

March 11, 2008

…about one woman’s experience with fibro. Recommended reading!

The Nature of the Beast

March 5, 2008

I have fibromyalgia. I keep this separate blog about it, because I like the idea of keeping it apart from my “real life.” To define myself by this syndrome is like a donut maker whose describes his life by telling you about those little rings of dough he fries up every morning, or a street sweeper who, if you ask him about himself, tells you about his broom and his dustpan. It’s not who they are, and fibro is not who I am. It’s just a part of me.

Increasingly though, it’s taking a bigger place in the spotlight. It pours through the layers of my life, and makes them hard to separate. Fibro can be a demanding diva. It’s insistent, this syndrome, and at times it screams for my attention. It seems that it takes up more and more of my time and energy, and it refuses to leave.

I’ve spent a lot of time crying about all of this for the past couple of days. I feel flu-y, foggy, and almost every part of me is in iron-hot pain (my right elbow and my tongue are feeling okay). Having this “thing” runs so counter to who I feel I “really” am, and I’m often frustrated by the betrayal. It really mucks up the way I run my life.

Imagine having something that no one can see, and no one can understand. Believe me, it’s impossible to understand it. Doctors, family members, friends, insurance companies, employers– they just don’t get it. How can they? Those of us who have it don’t understand it ourselves. And often, those of us who have it don’t want to acknowledge it to anyone because we have a hard time handling the looks, the attitudes, and the unspoken judgments that we see on the faces of others.

My body’s in a great deal of pain most of the time, but usually I’m still moving, still trying to keep my spirits up, still hoping that my will to be strong and functional will win out. I try to push fibro into the background and pretend it doesn’t exist. There’s always a part of my brain that’s telling it to shut up and leave me alone. I refuse to lose myself in it, but it’s hard to not want to give up sometimes.

I’m lucky to have a loving partner who’s so incredibly kind to me in the midst of all of this. Many people leave their significant others under the stress of this syndrome. Tom knows I don’t like to discuss it, don’t like to bother others with it, but he makes me talk about it sometimes. He holds me while I cry. He rubs my body and tries to make me feel better, and usually he does. He may not understand fibro, but he understands me and what I’m fighting for here.

I often struggle to recapture the “old me,” the one I liked, who could do what needed to be done when it needed doing. The self-sufficient one who didn’t have to think about whether she’d make it through a day at work or maintain the physical capacity to get simple tasks done, the one who earned a decent income and was at least somewhat of a contributor to the world. The bubbly gal who loved to be around people and experience new things. At my current best, I still feel like I have it so much better than so many others, and that this cancels out my right to gripe. At my worst, I feel completely irrelevant as a person– like I’m just taking up space on the planet.

Not too long ago, I had a fantastic job. It was a contract position, and if I could have made it through until April, I would have received a really nice severance package. I had an incredible supervisor and many wonderful coworkers. The travel distance was long, the stress was enormous, and it absolutely wrecked my body. I was faced with the prospect of trying to somehow tack together everything that was falling apart. This is my normal way of doing things– if something goes wrong, go into Sherlock Holmes mode. Identify the problem, look for answers, and solve the damned thing. But there are no answers here, and no solutions to the puzzle. Life begins to fall apart faster than you can repair it. It all becomes like that Woody Allen quote: “If you want to make God laugh, tell Him your plans.”

I’ve traveled long distances to see specialists, to discover a fix and regain some hope, but with fibromyalgia, you soon discover that there is no fix. I’ve read, I’ve consulted, I’ve experimented. One doctor sends you to another who sends you to another. The search for non-existent answers leaves me more stressed and in more pain. The usual “miracle cure” is a page from a prescription pad, and I refuse to become some zombie held together by pills. There’s a woman in here, a woman with a brain, a nice personality, and what once was a pretty deep passion for life. I’m not giving up on her yet. This is absolutely not to say that taking meds isn’t what some people need to do to ease some of this. It’s just that I’d rather have the pain than the side-effects.

Here’s the way it works, out in the real world: You can’t just say, “This is what’s happening to my body, my spirit and my mind.” You have to prove it, which, from an employer’s standpoint, or the standpoint of Social Security or an insurance company, is understandable. But it takes massive amounts of energy to prove that you have no energy, and for someone with fibro, you pay in pain. Soon, your money and your steam run out, and with it, your access to resources, and eventually, your dignity. Personally, I’ve made the decision to give up trying to prove anything. I just wonder how I’m going to push my little cart when I become a bag lady.

I resent the hell out it when someone says that this is hypochondria or a physical manifestation of something going on inside the patient’s head. Much of the medical community is as guilty of this as anyone. Some doctors have a godlike, egotistical way of thinking, and often seem to believe that if they can’t figure something out, it must exist solely in the mind. I’ve bitten my tongue through so many condescending conversations with them that I’m surprised I don’t spit blood. Doctors are just human beings in lab coats, and I’m tired of dealing with those who somehow believe that due to the fact that they’ve gone to med school, they’re on a higher level of the food chain than I am. Respect, dudes. We Fibromyalgians need some respect.

Right now, I feel sapped of energy, resilience, optimism and patience. To me, it’s all quite humiliating. I often hide myself from friends and family, and I don’t go out much anymore. The joy I find is here at home with Tom and our cat, and from the writing that I do. Writing connects me with others in a beautiful way that often takes my focus away from this syndrome. I can talk about subjects that have nothing to do with chronic pain, and no one looks at me funny if I can’t walk down my stairs, if I have a migraine or chest pains or if I have to take three naps during the day. On my best days, the joy that’s deep within me reemerges and spills out onto the page. It lets me reconnect with that woman I once was.

I miss her.