The perfumed, perpetual patient

I got all dressed up Friday night. Took a hot bubble bath with some sea salt and baking soda. Sprinkled in some essential oils of ylang-ylang and tea rose. Shaved my legs even though I'm not really in the mood for much action. I just needed to feel beautiful. Silky and scented. After the bath I unwound the cord which has been wrapped tightly around my curling iron for ages and produced several strands of thin chocolate ringlets around my scalp. Once I had played with my hair until my arms and feet were aching from fatigue, I perused my closet for something dressy but comfortable. Chose a short-sleeved red knit top and a black pleated skirt that I think I've only worn once before. I was quite happy with how well the two went together and decided that this whole exercise had been a good way to experiment with dressing up when I had plenty of time rather than when I'm in a rush to meet someone somewhere, which is usually the case.

At any rate, A. was quite pleased with the results. My curvy top lured him from his laptop to kneeling in front of me as I sat in the recliner where he kissed my neck and gave me a foot massage.

Perhaps it was the description of one of the main characters in the book I'm reading, The Map of Love, in which she is lavishly dressed that made me want to dress up. A craving for just a piece of her world. Maybe it's just that I'm tired of wearing pajamas all the time. Tired of being the perpetual patient.

The result of the cystoscopy was the second worse possible -- the worse being cancer of some sort, which I really hadn't been giving much thought to given my age and gender. The next worse after that was to find nothing. Yup. And that's just what the urologist found. My urinary tract is completely, absolutely, freekin' normal. No structural problems. No obstruction. Not even any Interstitial Cystitis (I knew that diagnosis had been dubious). Through my anesthesia haze I asked the urologist why, then, do I keep getting these UTIs. "Because you're a young, sexually active woman." I then pointed out that I haven't been particularly sexually active. "Oh. Well, then I don't know." And it's no longer my problem he seemed to be thinking. He did his job -- made sure my urinary tract was mechanically sound -- and since it was he could wash his hands of me.

Am I that annoying of a patient? I don't mean to be. I try so hard to be pleasant and affable, despite the fact that I'm exhausted and in pain.

Gawd I just want it to all be over already. I so wanted something they could just fix and be done with so I can go back to doing yoga and pilates. Getting a decent night's sleep. Cuddling without discomfort.

And believe it or not, the very next day when I went to see my doctor at my clinic to follow up, there were the results of the urine sample that had been cultured from the Friday before. The earlier proteus bacteria from the UTI back in early December was still there. I still had a UTI. The scary thing about this was that the urine analysis had been completely normal and so we thought it was gone. The nurse practioner simply had it cultured as a sort of formality to demonstrate that it was gone -- something the urologist hadn't bothered to do the week before. Lord only knows now how long I've had a UTI as we haven't been culturing the UAs that have been normal.

Needless to say my doctor was shocked that nothing was found and then baffled as to what is causing this to be so persistent (when they culture the urine they also check to see which antibiotics the bacteria is resistant to). He's put me back on another antibiotic among those that the proteus isn't resistant to and this time for a long time. I'll see him in a month to see if it's gone. If it is, he'll probably keep me on a low dose of antibiotics for awhile as a prophylactic.

And that, possibly, is the one good thing out of all this. The doctor and I are starting to suspect my Chronic Fatigue Immune Dysfunction Syndrome may indeed be caused by some sort of subclinical bacterial infection, and several months on antibiotics may end up providing us with some very interesting information. If nothing else, the fact that my immune system isn't mounting the traditional response to an infection -- to increase white blood cells -- is already indicating that something is wrong with it.

In the meantime I'm in so much damn pain. I never get normal UTI symptoms -- burning with urination, having to pee a lot, etc. Just back and pelvic pain so that it feels like someone is driving a nail through the base of my spine. During my periods the pain is unbearable, despite a lot of narcotics and muscle relaxants. I can say that today -- about 72 hours after starting the Septra -- the pain isn't quite so bad. My back is still killing me but that pressure sensation that starts in my pelvis and runs down my legs is almost gone. Maybe a month's worth of Septra will eliminate more of the pain.

As I was doing some googling today regarding Septra and Lyme disease (the possible sub-clinical bacteria culprit?), I came across a post on an online forum about a disease I'd never heard of: Morgellons. The predominate manifestation is skin lesions that produce "fibers" similar to fibrous material, as well as insect-like sensations. Those with Morgellons also have most of the same sort of symptoms that those with CFIDS/FMS have. However, they have traditionally been diagnosed with a psychiatric disorder, Delusional Parasitosis, in which patients supposedly "mistakenly" believe they are infested with a parasite.

The way psychiatry is used to marginalize the sick absolutely fascinates me. There's got to be some research on it. If my brain wasn't so loopy from all the narcotics and muscle relaxants, I'd totally be reading some Foucault right now. Actually, I don't have Madness and Civilization, which would probably be the more relevant work, though I do have Discipline and Punish and Birth of the Clinic, which are probably also fairly relevant. However, as I barely have the mental faculties for reading a novel at this point, Monsieur Foucault shall have to wait.

I'm also interested in the importance of validation of an illness from the medical community. Obviously this becomes vital when social security benefits or insurance coverage are at stake, but there's also some sort of emotional need for it. For whatever a person has to be a "real" disease as opposed to being "all in your head." The whole dualistic aspect is intriguing, particularly when compared to, say, Chinese medicine. This need to put illness in one box or the other. I mean, I really think this is a significant issue in the way conventional medicine is practiced, both for the doctor and the patient. It's clearly not a problem with the scientific method -- well, or is it? What if there are multiple affirmations to the proverbial hypothesis?

Hmm...not sure I'm able to articulate whatever it is floating around in my head -- Thomas Kuhn and paradigm shifts and all that. Think it's time to head back to novel reading. Though maybe I'll play with my hair and spray on some of my homemade perfume first (most purchased perfumes make me ill). It's a kickass fragrance actually -- my own blend of ylang ylang, Egyptian musk, tea rose, jasmine and geranium in a vodka base. Ode de Michelle...