Blatherings of Boredom

so i'm in the mood for some more music. all day, i listened to a scrambled mix of Shane McGowan and the Popes (two albums), the Pogues (1 album), Voltaire (1 album), and Sarah MacLachlan.

So now I'm in the mood for something different. With 600 CDs to choose from, this should be an easy task. Of course not. Skold, Mike Patton, Skinny Puppy, Faith No More, Enigma, Fantomas, Enya, Garmarna, the Gathering, Rasputina... There are too many choices. There's stuff in those cabinets I didn't even know we OWNED. Yet there they are, sitting in their dust free little shelves.

So I found Brendan Perry's solo album. Calm, soothing... I'd rather listen to something which will pump me up, but my ears want crooning. I can't wait for the next Fantomas--it will perfectly suit my nighttime needs.

Anyhow, the doctor got sick of me calling daily, so she prescribed Neurontin. This is after she attempted to prescribe Elavil. Been in that hell once before, no thanks. I don't know how long I'll take the Neurontin, since the neurologist will want me off of it for the EMG, I just hope it helps some of this pain.

Of course, for kicks I read the adverse side effects. I'm one of those kids who gets the worse of the worst with most meds. Advil makes me hallucinate. Trazadone made me believe my teeth were engaged in a conspiracy against me.

I'm sorry, my teeth should NOT mutiny. I sustain them with blood, nerves, and oxygen.

Needless to say, this is why I avoid meds and attempt to manage my health on my own, whatever the cost. Of course, sometimes I need help.

So, I have to ask my epileptic friends... Are all anti-convulsants this risky? Do they all have these horrifying potential side effects? I know the brain is grossly misunderstood, but DAMN! they don't allow painkillers on the market which have a "Frequent" side effect list including anorexia, flatulence, hostility, pneumonia, etc. Okay, so they do... Frankly, I'm looking forward to the "strange feelings", lip hemorrhage, antisocial reaction, testicle pain, odd smell, and skin necrosis. (Those are classified rare and infrequent, btw.)

I've listed a small sampler of the adverse effects listed.

That doesn't even account for the dizziness, ataxia, and sleepiness expected from this type of med. I use "expected" loosely. Folks, I'm a guinea pig. They don't know how or why this drug works. Since the alternative is not washing my hair until I can stand, I guess I'll take it.

Yes, I think this is funny. I cracked up reading this med sheet out loud during dinner. My husband freaked out, but did find certain elements funny. Would we laugh if one of them afflicted me? Yes, but it would be a bitter laugh.

Anyhow, I'm slightly more mobile. Dizzier, but I was dizzy before I took the med. That's just one of the parts of fibro and cfids that gets out of control when I can't sleep.

So I'll take my Melantonin soon and find a book for half an hour... Then I'll sleep the sleep of the restless. I'm in a good mood, though. Back to my normal, feisty, cynical self.

BTW, does anyone know an antidote for dizziness? It's not causing too much nausea (got ginger for that), but it's affecting my mobility. When I'm standing, it's the "room falling up, i'm blacking out" dizziness that causes things to fade. It lasts after I've been upright for awhile, assuming I don't fall down immediately. If it's blood pressure, I don't know how I could add more salt to my diet without turning into a a mummy. While sitting, my couch turns one way, the room spins the other, and the floor moves up and down in waves.

Odd. Maybe I should try painting my view. Of course, the easel would tilt the wrong way most of the time.

So it goes...

My feet hurt... they really *hurt*.

They've bothered me for years. At first, it was a pang that struck when i stepped on my foot wrong or drove my car (manual) too long. Right in the ball of my foot--quick, fleeting. You'd think that feet with perpetually numb toes couldn't HURT this much, but they did. With time, it grew to happen when I was barefoot or when I wore any non-flat-soled shoe. I complained to my doctors as early as 1997. They brushed it off. "It's just fibro, it's nothing to worry about, wear better shoes."

Then it got to happening whenever I wore anything but sneakers (nice, supportive cross-trainers) or good walking boots (rockport, doc marten's). I asked for an eval. My doctor ignored me, choosing to focus on my ever-present food allergies. I totalled my car and ended up relying on mass transit and my feet.

It's been nasty. My feet always hurt--even when i wear good shoes--whether they're bearing weight or not. I have trouble falling asleep (yes, more trouble than the CFIDS and fibro normally cause). The pain wakes me up in the middle of the night/day/afternoon.

Two days ago, I finally saw a podiatrist. I had to beg my doctor to give me a referral and last week she finally caved. He rubbed my feet, poked them, prodded them, made them hurt a lot more... And he told me I probably have neuromas. He said that I need to go back to my physician and that she needs to order some tests (send me to a neurologist, rather) and prescribe some meds for the nerve pain. He felt that she needed to oversee the medication regimen, so he sent me on home that day.

He didn't do anything for me other than validate me. I felt so happy, I nearly cried. I rarely take pain meds, but I'm considering it now because nerve pain is so hard to ignore. I can cope with the fibro pain even if it means crying myself to sleep some nights. With nerve pain, I can't do that. The pain literally takes my breath away, the way fibro pain did before I grew accustomed to its omnipresent nature.

And the doc said I shouldn't have to live with this pain. He's right, I shouldn't, but some docs seem to disregard chronic pain--especially in young women. I'm tired of planning my schedule based on whether and when I have the stamina and pain tolerance to walk 30 feet to the bus stop. What's more, the neuromas can probably be FIXED, unlike CFIDS, fibro, and MCS. Somehow, I find that exciting.

I'm awake right now because I cannot sleep. I hate giving into the pain like this, but that's my life at times. Soon, I'll have to stand and go brush my teeth, remove my contacts, and wash my face. Then I'll crawl into bed. I might read a little. I don't know if I'll cry or not. I'm feeling happy because a doctor agees that my pain isn't all in my head. On the other hand, I'm still confused and distressed about yesterday's allergist visit. This reminds me why I quit going to doctors for a year or so.

Having a chronic illness is very overwhelming at times. I don't consider myself a strong and resilient person, but most other people do. I guess that's what happens when one refuses to let anything wear one down. I may pay for grocery shopping or museum browsing with pain and bedrest, but I *earn* those. If I'm going to be all achy, whiny, and tired no matter what, I'd rather have the impression that I've brought it upon myself. Yes, it's a fucked up form of empowerment. So it goes.

I have a love-hate relationship with crying. It makes my eyes feel good, my sinuses burst with pressure... It makes me feel weak, but helps vent pressure. There are times when I can't help it--thoughts of loss, sad movies, happy movies, dead animals. And there are times when I can't make the tears flow.

Tomorrow I'll go to the dentist and then hang out with a good friend for the evening. Boy is going to a concert with an old roomie, so he won't be around to entertain me. That's okay--Ive got other friends who love and understand me. ;)

We've dinner and a movie planned. I'm sure we'll be doing lots of walking, but I refuse to let this rule my life.

Someday, I'll learn how to levitate.