Tuesday, June 17, 2008

Not letting it get to me, or, scared of my own shadow

I keep telling myself.... "Don't let it get to you!" When I woke up Sunday and realized that I didn't feel quite right and I started making more frequent trips to the bathroom with some measure of urgency (hard to run with your legs crossed trying to hold it in!) it dawned on me that I had yet another UTI coming down on me.

I've had a number of them since starting this trial. It's never been more than an annoying inconvenience ... until now.

It seems this news of the fingolimod coma and death have made an impact on my psyche, moreso that I was aware of. I find myself making sure not to touch stuff out in public any more than I have to, I've enlarged my "personal space" from a foot or so to more like six feet, I make sure not to put my hands to my face when out in public, and when I come home I scrub my hands and arms thoroughly as if prepping for surgery.

Why take any chances, right? I mean, if I can keep myself from letting any virus or illness strike, then I better use all the defenses I have.

So, when I got the UTI it was more than just your ho-hum, "I'll just drink more water and make it go away" reaction. It was more like sheer terror. Like "oh my God! I can't have been invaded by something my immune system is going to have to fight! What if I have a relapse too?? Then what??"

HUMOR ALERT:-------------------------------------------------------------

When I googled "look of terror" to add something here, look at the image that came up in the search results. I nearly spewed my decaf all over my screen. I wonder if it comes up when searching "bad hair day" too?!

/Humor Alert-------------------------------------------------------------------

On the outside I am telling myself I need to just calm down. Just because one person died and another is in a coma while in this clinical trial does NOT mean a UTI is going to kill me. But then there is this really annoying tiny voice in the back of my head that no matter how hard I try I can't shut her up. She saying "it could happen," and then just leaving the conversation at that as if taunting me to fret over it.

Which I am very good at doing. I come from a long line of worriers. Over the centuries we have perfected the art of imagining every possible horrible scenario and then wasting precious time fretting over them, when nearly every single time the eventual outcome of the scenario is in real life nowhere near as bad as what we had imagined. Thus all that precious time spent worrying could have been used to do something more productive, like end the health care crisis, or world hunger, or achieve world peace. But no, we women of the Clan Worry do what we do best. It's in our genes.

I don't think my sister got that gene. Or the memo, or something. She's more of a "I'll worry about that if I have to," kind of person who doesn't expend emotional energy being worried. I don't know how anyone can be like that. She could be in peril or something and not even be aware. You have to foresee all possible, grisly outcomes in order to prepare for them and avoid them. It terrifies me to think of being so blase as to take life as it comes and not worry about it. What do people like that think about??

So, back to the UTI. I called the trial coordinator because that is what she said to do just last week when I called to pick her brain about what she knew of the recent death and coma. She told me that I shouldn't worry (here we go again...she has no CLUE who she's dealing with!) and that I have always done the right thing and informed them of any UTI or URI I was having and got it taken care of swiftly. That was the way a "good trial patient should react." (I took that to mean "with a modicum of terror", so I'm apparently a "model" patient.)

Anyhow, she told me to get with my PCP to have a urine test done and get on antibiotics. I got in to see him yesterday afternoon and because there really isn't anything besides Doxycycline that I'm not allergic to, and his lab tech was out for the day, he just listened to the symptom list, poked me in the lower abdomen and than banged on my kidneys trying to elicit a scream, and when none was forthcoming, he whipped out the prescription pad and wrote out the usual. I told him he should just have a pad printed up with my name, the Doxy scrip and all right on it. Save himself some time writing since I know how much Drs. seem to loath that judging from their penmanship.

All this came about, no doubt, because I deviated from the routine. The Routine being:

Drink lots of water and snack all day long.
Avoid caffeine.
Avoid sodas.
Eat right.
Go to bed at 10 p.m. or at least fall asleep in front of the TV then.

The part I deviated from was all of the above except for "Avoid caffeine." I didn't drink my water, I drank sodas, I skipped meals, and 2 nights in a row I was up til after midnight and then got up at 5 a.m. because Little Kitty (who is now nearly bigger than Big Kitty, but we didn't forsee that when naming them) sharpens her claws on my box spring at 5 "sharp" (pun intended). By the time I have flung my foot off the side of the bed to wave around wildly trying to make her cease and desist, I am fully awake and get up because I can't go back to sleep. It works out perfectly for her. And she doesn't need anything but just wants me to get up to go in the living room with her where I have found she will leave me alone and allow me to resume my sleep in the recliner.

Anyhow, all those factors resulted in the inevitable UTI of which I now write.

The scary part is the *pseudo exacerbation* that comes with it. On top of the frequency-urgency-lowerabdomenpain I'm dealing with, I am also experiencing some old symptoms. My feet have numbed up a little bit and the tops of my feet and fronts of my calves now burn with the fire/ice feeling a little. Not enough to make me seek out medical intervention, yet more like a "Wow! I forgot I used to have a feeling like that only way more intense," reaction.

So, I have to keep telling myself that this is NOT a real exacerbation, but only a shadow of a former one trying to scare me. When I get the mild temp and the infection back under control I will be back to my new old self.

Banish the fear from my mind (fat chance!) and fill my glass with water for no measly little UTI is going to get the better of me! Cheers! I'll drink (6-8 glasses per day) to that!


  1. Can I laugh or not?!? Because even in your fear/discomfort/uncertainty you STILL write with such a flare as to elicit the minimum of a SMILE!!!

    Sorry to hear about your potty issue...I'd say that sucks, but it more likely burns than anything. :-) Hope things return back to your smooth sailing/feelin' groovy self soon!

    Linda D. in Seattle

  2. I know how you feel about the fingo news stories--the death and the coma. Someone tried to shake my hand at church this morning (I had been trying to slip out to one side of the main door and avoid it). Failing to avoid him, I kind of slipped by his hand when he reached out to grab mine and grabbed his wrist instead. Ooooh, hand shaking. NAsty habit. :-) I feel like I need to wear a nametag to church that says "I'm taking an immune system suppressant (or possibly a placebo, long story). DON'T shake my hand, pleeeeeease!" To top it off, I had just seen him coughing.


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