Tuesday, April 25, 2006

I look good.

For the first time in my life, I have a car which I bought not because its predecessor was dead.

I have never owned a new car. I do not believe, philosophically, that I ever will.

My first car was a 1965 Chevy Impala, four door sedan with a 327 automatic. It was white, and boat-like in its handling. It was traded to my parents for a 1972 Chevy station wagon, because they wanted to sell it, and it wouldn't sell, but my car sold quickly.

The station wagon was on its last legs when my father found a 1974 Pinto. It was charming, in that Pinto sort of fashion, with a starter that would vibrate off from time to time, and at one point had one yellow door on its basically brown body due to a spin-out into a pole at the side of the road during a downpour. I sold the dying Pinto (soon after it actually launched one of the spark plugs out of its socket), and got a late '70's Chevy Monza.

The Monza died an interesting death. I was driving to work on the freeway one morning, and as I shifted from third to fourth gear, the clutch cable broke. I got the car to the right side of the road, but by the time I got stopped, I was actually on the painted safety area between the roadway and an entrance ramp. I got out of the car and began walking up the hill alongside the ramp (the days before cellphones, don't you know) when I heard a large BANG! and I knew precisely then that the Monza had met its end. Some genius was pulling onto the freeway and looking backward over his shoulder for oncoming traffic, and moseyed over onto the safety area and creamed hell out of my car. When I went to look at the remains, the vanity mirror that had been on the shade of the driver's side was in the back seat. Had I been sitting there, I assume it would have gone through my parietal lobes to get to its ultimate resting place.

The Monza was replaced by a '73 Monte Carlo. I loved that car for a couple of reasons, the best being that it was the only two-door car I'd ever had with swivel bucket seats, which made entering and exiting a much more pleasant experience.

The Monte Carlo went to my brother, and I had a VW bug, year indeterminate since they all looked the same. The distinguishing characteristic of this one was that the heater not only didn't work, but wasn't hooked up, so one had to dress for survival. The other distinguishing characteristic was that, from time to time, the left headlight would fall out, crashing dramatically to the pavement.

The Bug was replaced by The Benz. The Benz was more than 20 years old when we bought it, and we put another 125k miles on it before it ate its own timing gear. (Not to digress, but I'm becoming aware that I have had a rather large number of brown cars. Not that I like brown. Maybe they're just cheaper than other colors.)

The Benz was replaced by a Ford Taurus, and a more dreadful car I have never had. It compared poorly against the Pinto.

I would like to add parenthetically here, however, that during this period, I acquired a husband with a different automotive philosophy than my own. I am a utilitarian, believing that automobiles are a form of transportation. He believes that his autos are an expression of himself, and thereby has chosen to drive such things as a half-ton Dodge Ram (the two actions necessary to drive successfully in Florida), a Triumph Spitfire (in which he looked a great deal like Fred Flintstone), and a Fiat Spyder. In fact, he has owned two Fiats, not reflecting well on his judgement, in my opinion.

The Taurus was replaced by a Chevy Corsica, which had its own issues, having had the head re-ground and the head gasket replaced three times in the first thirty thousand miles. We gave up on it and gave it to Public Radio, where Click and Clack could use it as a bad design diorama.

After the Corsica, we became an all-Volvo household. I had a 91 740 Wagon, and he (still) has a 92 960 Sedan. They are very dependable, solid automobiles. They are not sexy.

I decided a little while back that if I was going to have to have a dread disease, I was going to look cool while doing it. So, I have a very cute Vera Bradley knockoff backpack strapped to my oxygen cart, with a matching shoulder bag in a bright yellow and blue Provençal print. And last Saturday, I picked up a 1994 Jaguar XJ6, champagne-colored, with 57,000 actual old-lady driven miles on her.

She is lovely.

And I look FABULOUS in her.

Perhaps my husband's automotive philosophy is rubbing off on me.

Monday, April 17, 2006

The Latest Movement of the Organ Recital

Well, I got the results of some tests last week, and they look better. My original pulmonary artery pressure in January was 125, whence the normal range is closer to 18. I had an recent echocardiogram, which is not the most accurate measure of pulmonary pressure, but a good one nonetheless, and my pressures appear to be nearer 25, which is very good.

I'm now on three grossly expensive medications, but, after all, it's only money.

I also now have my own collection of meters. I have a blood pressure cuff for my wrist, a blood sugar meter, a pulse oxymeter, and a thermometer. One of my co-workers followed me in with my little oxygen cart, and said "Are you opening your own mobile hospital any time soon?"

I do not plan to do this, but it's an idea, and if I can charge rates anything like big immobile hospitals, I'll be a mill-yon-air.

Thursday, March 30, 2006

The Joys of Walking

Okay, it's not the same as the Joys of Sex, but walking can be pretty good.

Yesterday I went to the pulmonary clinic for some tests. I have some of the results and I understand precisely nothing that any of the results report.

However, I had another echocardiogram, and while I do not have the results of that, they DID send me home, unlike the first one after which they sent me to the hospital.

The best news was that I did another six minute walk, and this one covered three hundred-plus meters, and my oxygen level never dropped below 93%, and my heart rate stayed under 120 bpm the whole time, which is a huge improvement from just a couple of weeks ago.

On the 13th, the doc doubled my Viagra from 3 to 6 a day, and I'm convinced that this is making the difference.

I never thought that walking up and down a hallway in the basement of a hospital could be so exciting.

Thursday, March 23, 2006

Men, and other confusing things...

I shall now deviate from my obsessive writing about my new-found hobby to write about an old hobby... observation of the human condition.

I was hearing a couple of the talking-head sorts on the toob the other morning while I dressed talk about the Brangelina obsession. And how Jennifer was dealing with it all.

I was thinking about how life sometimes destroys great passion. I mean, I'm sure that when Brad left Jen for Angelina, Angie thought that he was just the bee's knees, or some such. Jen had been around him long enough to know better.

I mean, don't we all know that no matter how pretty Brad Pitt or George Clooney or (for those of another generation) Tom Selleck or Clint Eastwood appear to be, that they're just men and they do those men-things that just make them incredibly unattractive in the long run?

I mean, I adore my husband and think I could not do without him. That being said, his idea of cleaning up the house consists of hiding things. I have found long-lost items stuck in underwear drawers and linen closets, months and years after I had given them up for lost. He has improved; when we first married, he hid chawin' tebaccy spit cups under the bed, or under his desk, or under the couch. I did not find them until they had grown the attributes of a science experiment.

I think after Angelina finds a few spit cups under the Chippendale, Brad may not be as attractive. Maybe that's what happened with Billy Bob.

Thursday, March 16, 2006

The weirdness of illness

I went to the grocery store last weekend with my oxygen concentrator. It's on a cute little cart, but I put it in the shopping cart so that I wouldn't be trying to drag around two things at the same time. The oxygen boost really made a difference in the way that I shopped... I didn't get exhausted, or winded, or any of those things that made shopping such a drag before.

However, the folks in the store were sort of a hoot. I guess when you present with a cannula on your face, they assume that you must be sorely crippled or some such. People kept trying to be helpful, and the girl at the checkout counter asked me three times if I needed help with my bags. I thanked her and assured her I was fine. But she kept insisting. Finally, I just walked away slowly...

One of the things about the oxygen is that it dries out the inside of your nose a bit, but it is unadviseable to use petroleum products near oxygen. So they suggest using KY jelly.

Let's take stock here; I'm taking six Viagra a day, and I'm shoving KY in my nose. Is this the kinkiest thing I've ever done, or what?

Monday, March 13, 2006

The Organ Recital

I went to the doctor again today.

It seems that this has become the focus of my social life. My new best friends are nurse-practitioners. My frames of reference are all doctors.

To measure pulmonary function, one of the things they do is make you walk six minutes and see how far you can go. They measure your oxygen saturation and your pulse while you walk, and make you stop if it appears you're stressing.

Last time I tried it, after two and a half minutes they made me stop because my oxygen saturation had dropped below 75% (you normal people would faint). I didn't notice, because I've been gasping and wheezing for so long, I think that's normal.

Today I walked the full six minutes, and my oxygen never dropped below 80%. I walked 640 feet. Doesn't sound like much, but before Christmas, I couldn't climb a flight of stairs. Mucho Bettero.

Also, since I'm doing so well, they've doubled my Viagra. Oh, am I so popular? I am now taking Viagra six times a day. I think if I could, I'd get a six hour erection or something. As it is, I just keep breathing.

I'm sorry this has become such an organ recital, but it's where my poor head is at right now.

C'est la vie.

Wednesday, March 08, 2006

Oh, one more thing...

The Good Ship Tabasco launches back in the water next week with a fresh coat of bottom paint.

I will probably wait to sail on her until the Bay is more than, say 50 degrees. The wind coming off the bay, even when the air temp is in the 80's, is mighty chilly when the water's that cold.

I just can't wait....

The Wonders of Drugs

Okay, so since my last posting on this page, I've gone from taking Viagra three times a day to breathing in a prostacyclin analogue six times a day.

No, I don't know what one is either. I know that prostacyclins have something to do with prostaglandins, which are named that because they were first found in the prostate gland, and I don't have one of those, either.

But at Seventeen Thousand Dollars a Month, I think they could grow me one.

I'm not making that up.

My monthly drug bill runs now in the $20,000 per month area, between that, my Viagra at a thousand dollars a month, and oxygen with a nifty new portable oxygen concentrator called Inogen One that my insurance doesn't quite pay for.

I'm very glad we have insurance. But part B of that statement is, it doesn't cover everything. I could buy a car every year (okay, a used one) for what we're paying in co-payments and co-insurance. I have lived in houses that cost less than one month of my drug bill (it was a trailer, but it was home).

And I go to the doc next week, and I may get me another high-dollar drug. Whoopee!

I had a sleep study last night at the sleep disorder clinic. The good news is that I do not appear to have sleep apnea. The not so good news is that sleeping while the oxygen hose is glued to my face, my oxygen saturation was still only less than 90% for most of the night, which isn't as it should be.

Now, the other thing they don't tell you is that they fiberglass the electrodes to your head, and take off the fiberglass in the morning with nail polish remover. In your scalp. Behind your ears. On your chin. I'm still peeling the stuff off.

They offer you a shower, but you have to use the dispenser hand soap and they have no towels. Oh, and there's a camera in your room, taking pictures while you sleep. And a microphone listening for your farts and groans.

Anytime you want to have electrodes glued to your head and be spied on while you sleep, well then, I have a recommendation for you....

Thursday, January 19, 2006

As some of you know, I have been being treated rather aggressively for asthma for the last year or so.

It has become increasingly apparent that the problem really isn't asthma, and so I've been looking at other places for help, visiting a few other specialists along the road. I made an appointment with the cardio a couple of weeks ago then promptly caught bronchitis.

She (the cardio) postponed some tests until the broncho had cleared up a bit, so early on Martin Luther King day, I showed up at the cardio office for an echocardiogram. The tech took me back into the test suite and began the exam, and about five minutes into a 45-minute exam, she sharply said, "I'll be back in a minute."

Never a good sign.

One of the cardio partners came in and looked at the screen on the echo machine, and said something about 4 or 5 centimeters. He then asked me what my plans were for the rest of the day.

I told him I had to go to my boss's house and repair his wireless network. The doctor told me that that had been Plan A, and he was about to introduce me to Plan B.

He said the echo showed a pericardium full of fluid about two inches around on all sides, and that I would need immediately to go to the closest hospital (which, fortunately for me is one of the best heart centers in the region... even vice-president Dick has been there) for a cardiac catheterization and draining of the pericardium. The cardio practice got me an "add-on" slot for the procedure to be done in the afternoon. I was at the hospital being prepped at 11 am, and a little after three they came and fetched me to the catheter lab. I was back in my room by 5 pm. Amazing stuff!

The reason for the catheterization is that the cause for the fluid buildup is pulmonary hypertension. You can look that up for yourself if you're interested; not very pretty, I'm afraid.

You may recall that a year or so ago I told you all that I'd been diagnosed with an auto-immune disorder called CREST syndrome. There didn't seem to be any consequences from this disorder at the time. That status has changed. Evidently CREST is one of the more common causes for pulmonary hypertension. Ooops.

Now, here's the fun part; the current pharmaceutical with the most bang for the buck (so to speak) is....

Viagra.

Yes, boys and girls, I am now taking a little blue pill so I can breathe. And I'm not sharing. I like breathing.

Wednesday, November 30, 2005

Now that I've done this...

I suppose it's necessary to offer something...

I'm a little fascinated with the process of writing. I think it's funny that I write differently--faster, shorter, less colorfully-- with a keyboard under my fingers than with a pencil in my hand. Pencil writing tends to be slower, more deliberate, more prone to drift (which is not a bad thing, overall).

In my more academic days I used to volunteer at the local county jail among female inmates who were beyond the GED and vocational courses offered. We went in and taught journaling, as best as one can teach something that personal (sort of like teaching someone to eat, I think).

One of the things we did was to introduce a writing prompt, a half-sentence as a jumping off point, and let the women write for about ten minutes and then share their writing, if they cared to.

I made a mistake one day. (Okay, I made lots of mistakes on lots of days.) It was toward the end of the spring semester, and I was a little stacked up with papers and such, and it was near Mother's Day, so I decided the opening prompt for the session was "When I think of the word 'mother,'..." Most of the women there were mothers, and I figured it would give them a chance to brag about their kids.

Uh. I was, uh, incorrect.

In ten minutes, I called time and asked for volunteers to read their journal entries. Without exception, each of the women had some version of "When I think of the word 'mother,' I think about how much I've disappointed my mother, by making such awful choices in life, in men, in hobbies, in addictions, in (take your pick)."

Within another ten minutes I had a circle of bawling inmates, with tales of woe... boyfriends who beat them and forced them to carry drugs, casual drinking that became horrendous intoxication, stealing from family members and friends, all manner of human tragedy.

And all I wanted to do was to help some women express themselves better. I wasn't prepared for what they wanted to express. That wasn't my job...

But I say all that just to say that I have opened this window to express myself. I don't know what I'm going to express. (Isn't that what they call it when you squeeze some kind of horrid carbuncle?)

First things...

I'm doing this because someone told me I should. Not usually a good thing, but in this case, it's someone whose writing (and person) I respect, and because I should have been writing for a very, very long time and I've just not.

I used to write a lot. I used to write for cash money. I used to teach writing.

Then the realities of Living In America caught up with me, and I grew tired of being broke. So now, I climb around under people's desks (stop that at once!!) repairing and administering their computer networks, and it really pays much better than writing. Unless you're Stephen King or some such...

At one point as an adjunct professor, I could have taught five sections every semester and still collected food stamps.