Sick of pretending I'm "serene"

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Name: Ellie Omans
Email: eomans@tribecaweb.com
Date: 04 Jun 2000
Time: 03:29:33

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I am a 47-year-old, WAY-TOO-WHITE female. I have Multiple Sclerosis and am pretty much home-bound as a result. I spend most of my time feeling WAY TOO SORRY FOR MYSELF and PICTURING MY BODY DECOMPOSING IN A CASKET (which is of course lined with beautiful white satin). I have two post-graduate degrees that I never got to use (struck down as I was in my prime). I am a child of the sixties who now watches CNBC all day. I am, in short, an oxymoronic cripple. Here are some of my thoughts.

5.10.00 Diatribe. Anyway, just got back from the neurologist. I keep going to these jerks in the hope of a miracle cure (Tommy I'm not). This guy is really pushing for me to have this baclofen pump implanted. Anyway, it's manufactured by MEDTRONIC, is slightly larger than a pacemaker, is implanted in the abdomen and the catheter runs directly into the SPINAL CORD. It's supposed to help the stiffness/spasticity without the heinous side effects of the oral form of the medication. It IS surgery, however, so I'm a bit reluctant to have it done. We'll see.

So listen to this. I bought a book through Amazon.com called "The Clinical Neuropsychiatry of Multiple Sclerosis" by Anthony Feinstein. Apparently it's a medical text. What it was doing listed with the books for us regular people I don't know, but I guess that's why it was so EXPENSIVE. But all I got out of it really is that MS is regarded as the "prototypical white matter disease" and that my "lesion load" is probably >30 cm squared.

Here's another good one: "Atrophy and/or lesions of the corpus callosum are present in patients with delayed speed of information processing and difficulties transferring information between the cerebral hemispheres." So I'm not nuts. And listen to this: "Each prefrontal circuit is associated with a specific behavioral syndrome. Lesions located in the dorsolateral prefrontal cortex produce deficits with executive function, namely planning, organizing, sequencing and abstracting. . . .Anterior cingulate pathology typically produces abnormalities of motivation and individuals may present as profoundly apathetic or abulic." (Which is why I don't give a shit whether I live or die--I'm PROFOUNDLY apathetic.)

Can you please explain to me why I did not go to medical school (although those daily QUARTS OF VODKA may have had something to do with it)? I mean, I have a sub-specialty in Neurology now for chrissake. Who are these MDs kidding? Do they really think that we think this stuff is hard?

5.12.00 Diatribe. So the LATEST medication the doctor put me on is a new "ANTI-NARCOLEPSY" drug. It's called Provigil (in FAVOR of vigilance? Who would be OPPOSED to it?). We'll see. Between the anti-depressants (prozac AND wellbutrin), the anti-vert (for the DIZZINESS, but which DOES NOT WORK), the (every other day) INJECTIONS of Betaseron and the monthly intravenous infusions of cyclophosphamide AND methylprednisolone, I'm getting really tired of all these meds. My skin is all bruised from the betaseron injections and the chemo IVs (with all the weight I've gained they can never find a vein on the first try, plus the IVs usually blow).

The next thing you know is I'll have decubitus ULCERS all over my body. I'll PAY somebody to whack me (Although that would unfortunately, be a MORTAL SIN). As it is I can't WALK, DRIVE, THINK, REMEMBER stuff from one minute to the next, PROCESS INFORMATION or have SEX (not that I'd WANT to anyway) AND I'M DIZZY EVERY MINUTE OF EVERY DAY!!!!! I feel like my brains are IN A BLENDER! I don't want to get off on a RANT here but I'm SICK of being the docile, uncomplaining patient. NOBODY even knows what's going on with me because I don't want people to FEEL BAD or SORRY for me. I don't think I could accurately describe how truly AWFUL I feel. But I'll tell you one thing, who the HELL wants to just EXIST like this? Thirty (plus or minus) more years of this?!? The next thing you know I'll be wetting the bed and having people WIPE MY ASS!!!! As it is now I can hardly make it to the bathroom (because of urgency and navigation problems) and once I'm finished I can't get my BIG FAT ASS up off the toilet. This SUCKS!!!! I can't even dress myself or take a shower without help (I have to plan showers like a week in advance-that's how long it takes me to work up the energy-and then I'm wiped out for at least an hour). Too bad Kevorkian is in jail (of course, there'd still be that MORTAL SIN issue). But believe me, I now know why so many of his clients are MS VICTIMS. OK, I'm done for now.

5.13.00 Diatribe. So maybe the Provigil is helping me. I am so afraid to get excited about anything because every time I do, the effect about which I'm excited ends up being short-lived. In any event, this is my second day taking Provigil and I can honestly say that I seem to have more motivation. AT LEAST I'M WRITING THIS!!! Now if I could just get this room cleaned up and organized (and the living room painted, a living room rug picked out, etc.). I have so much computer stuff that has GOT to be collected and put away in some recognizable order. Next will be sorting through all of the stupid clothes I ordered (half of which probably don't fit, the other half of which I will probably never wear). I can't begin to tell you (whoever you are) how many outfits, dresses, etc. I have which STILL HAVE THE TAGS ON THEM, not to mention stuff I've only worn a few times that NO LONGER FITS ME!!!! Yeah, I'm made of money (an attitude that I've passed on to my kids apparently). But there are children starving in Europe . . . .

So I guess this writing thing is a good idea. I'll enjoy reading it even if nobody else does. I'm my own WORST CRITIC but also my own BIGGEST FAN. Who the hell else would want to read any of it though? The only people I can think of are those who are similarly affected by their MS . I certainly DON'T mean the SUNSHINE and SMILES crowd. I guess whatever works for them is fine. And I guess I was just too damned depressed to even tolerate what I perceived as their "Mary Poppins" attitude. I still am. But at least now I'm doing SOMETHING. And I don't picture myself decomposing in a casket nearly as often as I did just a short time ago. I don't even feel like lying on the couch or curling up in bed (at least not at this very second). I think I'm even typing almost as well as I did while I was writing all of my excessively footnoted papers while in Graduate School (at which I earned TWO Masters Degrees that I'll NEVER USE).

I wish I could find a discussion group of like-minded people with MS (supercilious assholes like myself who are going to hell in a handbasket with this rapidly-progressing DISEASE and WANT TO WHINE ABOUT IT). There truly IS something about sharing experience, strength and hope, regardless of the context. Maybe I should try to start one (a list or a discussion). If only it weren't so damned HARD to get dressed and do stuff. If only I wasn't TOTALLY DIZZY EVERY MINUTE OF EVERY DAY.

I can't believe these jerks next door are in their pool today. I'M FREEZING!! Why am I so critical of others? Who the ---- do I think I am?

Welcome to the Farise Project Site Portal

Name: Insurrylolo
Email: webadmin@brendabiz.org
Date: 20 Feb 2008
Time: 23:06:37

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This is the official homepage of the Farise <a href=http://farise.cn>site portal</a>. Official site has lyrics, sounds, articles, tour dates, discography, pictures, FAQ, and message board.

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Name: vfhgnpzmsf
Email: hzarnx@gixecx.com
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Email: ho3ibbo3day@mail.ru
Date: 11 Apr 2008
Time: 18:04:51

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