A Long Break

Okay, so I haven't written anything in a while. So sue me.

Lots of stuff going on. Before our trip to England, I was having some gastrointestinal distress. Like I was throwing up. Like every day. Okay, maybe not EVERY day, but multiple times per week. And I wasn't sick. It was just kind of a weird, sudden overload sort of thing. And it didn't matter what I ate, or how much.

In early September, I was complaining about this to another pal with PH (and I had made an appointment with the GI guy) and she said that those were the same symptoms she had when she was taking too much Revatio (the PH code name for Viagra). I asked her how long she'd been taking the high dose when she got the symptoms, and she said about 100 days. Wellllll, I'd had my dosage upped in May from 180 mg daily to 240 mg. About a hundred days earlier.

I shot off an e-mail to my PH specialist, asking if I could lower the dose since it didn't appear to be helping any, and it might be hurting some. He shot back that that seemed entirely reasonable to him, and I lowered the dose, and the symptoms got better. But not gone.

I saw the GI guy a few days later, and he said he thought it was probably gastroparesis, which is a semi-paralysis of the stomach caused both by autonomic neuropathy in diabetes and also several connective tissue diseases. Since I appear to have both, he thought it a good bet. So, the only real treatment is eating small meals often.

I have discovered the joys of the hors d'oeuvre menu.

In addition, I visited Mister Endocrinologist and my HbA1c was 5.8, which for those of you who don't know, means that yours truly has blood glucose under such good control such that it's nearly unmeasureably good. So, as a result, he is taking me down off the oral meds for diabetes, because they are both hard on the kidneys and stomach, and upping the insulin dosage. This is a little tricky, but I'm working it out.

Finally, I went to see Mrs Rheumy #1, my old original rheumatologist. I have two telangiectasia. Two. Most people who have them have hundreds or thousands. I have two. Telangiectasia are little red dots, maybe purply, which are visible on the face and hands, especially around the mouth and on the cuticles. They are cause by capillary malformations. They are the "T" in CREST syndrome, or limited scleroderma. I have one on my left ring finger cuticle, and one on the left side of my lower lip. Whatever the connective tissue disease is, I have a very wimpy case of it. Oh, except for the PH part.

I went to her because I was hurting all over, hard to get out of chairs, etc., and thought that it might be rheumatoid arthritis. She says it isn't, that it's bursitis in my hips. Challenging my emerging hula career, is she? She said I need to wear my good shoes and get orthotic devices. I told her I had some already, and she said I needed to wear them all the time. So I had to go shoe shopping (first time under a doctor's order!). And while they didn't have any pink saddle oxfords, they did have some very cute ones that are very comfortable, even with the orthotics.

So now, it is happy birthweek to me. I try to celebrate happy birthmonth, but sometimes that is very hard, so I do make a huge effort to have happy birthweek. When one is born on Hallowe'en, one needs to do something to set the birthday apart from the holiday.

On Sunday, we did the happy birthweek brunch at FarrahOlivia, which if you are a foodie like myself, you will recoginize as the restaurant of Morou Ouattara, who was sadly eliminated from The Next Iron Chef on the Food Network last week, unfairly and undeservedly.

My brunch was simple and wonderful. I had a tomato salad, and this is how it was constructed. On a very thin circle of puff pastry (about four inches around), smeared with a mild goat cheese, cherry heirloom tomatos were halved, topped with a balsamic vinegar syrup and spicy sprouts (maybe radish?) and garnished with a saffron and cayenne flavored salt on the side. Amazing.

The captain had flame-grilled asparagus, topped with grated boiled egg, bacon and a hard cheese (parmesan-like, but not).

I had bacon and eggs, well done but unremarkable, and the captain had a ham sandwich with shiitake mushrooms and truffles and a flavored mayo on the plate. Coffee was very dark roasted and served in a french press.

Delightful!

We have more birthweek (and birthmonth after) activities planned. Stay tuned.

England

On August 3rd, we left Dulles Airport on Virgin Atlantic, me and the Cap'n, and my brilliant younger niece. We arrived early in the morning August 4th at Heathrow. I would like to throw in a small kudo to Virgin, because they handled me and my needs extraordinarily well. US air carriers either do not provide supplemental oxygen, or charge $100 per leg additional to provide you a bit of gas. Virgin Atlantic takes their required-equipment portable oxygen bottles (called walk-around bottles), which they must have for crew members to be able to move freely around the cabin during depressurization , and adds a pulse conserver device to the top, and one small bottle lasted me the entire eight-hour flight at 2 lpm. And they did this for FREE. Bravo!

We proceeded to rent a car which was disadvantaged by having the steering wheel on the wrong side of the car, and a six-speed manual transmission which insisted on being shifted with the left hand. It was okay, because it appears that the English drive these malformed cars on the wrong side of the road as well.

We then proceeded to drive into downtown London. The congestion rules that make you pay a fee for driving a car into central London do not apply on weekends, and at 8 am on Saturday morning there isn't much traffic. We were armed with the Google Map instructions that I had e-mailed to my phone, a Michelin map, and a strong sense of self preservation.

We drove into town, and rather promptly found our hotel in Mayfair. We parked our car there, but weren't able to check into the hotel until the afternoon. The hotel restaurant was still open for breakfast, so we had a touch of tea and toast (and corn flakes). We went for a walk, up Berkeley Street to Berkeley Square. We saw no nightingales singing, but plenty of pigeons. No angels dined at The Ritz during our stay.

When our hotel would let us check in, we did so, and took a nap until six o'clock or so. When we woke, we walked up and down Piccadilly, window shopping, and decided to get take-out from Marks & Spencer and dine in our hotel room.

Early on Sunday morning, we got up and took the doubledecker bus tour which is required with each trip to London. Our hotel was near Green Park, which was the starting point for the bus tour (did I do some planning, or what?) so we trotted over there for the first tour of the day. Hopped on the bus (with tickets I'd bought online before leaving home) and went forth.

We saw the sights.

We went to Buck House, and Liz wasn't home (the bobbys suggested she might be at Windsor, but as we all know, she spends August in Scotland). But they were changing the guard, nonetheless, so we hung out. Very lovely horses. I suppose they stay that way when they're not regularly in the mud.

After we finished the tour, we hopped into the malformed car and headed north. We were on our way to visit our friends Tim and Sally, (hereinafter referred to as our generous host and hostess) who live in a town outside Manchester called Wilmslow (which I liked so much, I keep looking at the realty ads for available properties there). We drove on the wrong side of the road up the highway, past Birmingham and Coventry (where they make Jaguars, so we bowed profoundly as we passed through). We arrived at our destination using only our map and directions that our gracious and lovely hostess had e-mailed me a few days previous.

They welcomed us with open arms! (Lucky us! What if we'd arrived and they'd taken us into White Slavery??) We rather decompressed and hung out. The Cap'n and our gracious host began their week-long course in the finer points of cricket, with a supplemental thousand-page-book of rules serving as their sacred text. UK was playing India in a test match and were losing their tails. They took this as a learning experience...

On Monday we visited the Manchester Museum, the regular home of the Lindow Man, who was unfortunately on holiday in London during our stay. Nonetheless, there were a variety of stuffed animals and dead Egyptians to greet us.

We also went to the Manchester Airport. Not to the terminal side, but the backside. Airplane watching is a sport like birdwatching in England. Folks collect the registration numbers of airplanes they have seen, and there are databases tracking where these airplanes have been sighted. (Rather odd, imho.) But, in the viewing section at the Manchester Airport, they have one of the original BA Concordes parked, and on certain days, they give cockpit tours. This was not one of those days, but the Cap'n was more excited because there was a Hawker-Siddeley Trident on display next to it, and he'd never actually seen one of those. (It looked like an airplane to me.)

We took it slow and easy on these days. I tried to remember that I needed to not go full speed all the time, and I was careful to charge the battery in my oxygen concentrator every time we were in the car. I had two batteries, and fully charged, the two of them would last about six hours, so I was generally in very good shape, and never was in danger of being without.

Thinking again, it was slow and easy for me, because I would doze off and nap in the afternoon car rides, while our gracious and generous hostess hauled me around at her usual hundred miles per hour (she is recently released from the Formula One circuit). It was neither slow nor easy for her.

On Tuesday, we went to Wales. Our gracious and generous host is a Welshman, and we went to the sheep farm of his brother, where our host grew up. This was during the hoof and mouth scare, and they could not move their rams (at the lower farm) to meet with their ewes (at the higher farm) to make lambs for next year, and were rather concerned that this might well be disasterous. However, the restrictions were lifted in a few days, so we are hopeful that the lambs of 2008 will be on schedule.

They also raise and show Welsh ponies at the lower farm. Driving up to the house at the lower farm was a bit of an adventure. The road wound up the hill a bit, off the paved road, and became increasingly narrow until there was truly room for only one vehicle, and not a large one at that. At one point we met an opposing car, and had to back up to let them pass.

The Cap'n decided that Welsh was actually English that had been typed starting on the wrong home row. For example, the previous sentence in Welsh would read "Tnd Czl'n cdckcdc gnzg Sdlxh szx zcgjzlly Dnblkxh gbzg nzc bddb gtped xgzfgknb ln ghd sfonb nlmd fls."

We left the farm and went to Castle Conwy, in the town of Conwy, and climbed around. I did not go all the way to the top of the tallest tower (and mostly because the stairs were very narrow and would have been very difficult to navigate with the oxygen concentrator, considering the traffic was two-way). I did, however, go as high as the Chapel in the front end, which was halfway up the tower.

Conwy was built by Edward Longshanks, my ancestor (and probably yours; he seems to show up on a LOT of geneology charts), so my niece suddenly discovered that she's a princess, and not the JAP sort either. I assured her that she was not any sort of princess, that even Liz's grandchildren weren't all princes or princesses. Add to the fact that my mother's maiden name is of Welsh origin, and my grandmother was a Campbell, and Longshanks tried conquering all of them, it's no wonder I'm conflicted.

We stopped at a posh hotel spa tea room sort of place, which was gracious enough to accept us for dinner in our going-to-the-farm-and-castle-clothes. We had a lovely dinner and acted respectably, to our great credit.

Wednesday dawned cool and clear (as did every other day; we were very lucky) and we headed off to the metropolis of Barrow in Furness. Barrow is the birthplace of the Cap'n's grandfather in the 1880s. The drive there is a beautiful one, through the Lake District, near Windemere. Barrow is an industrial town, where Vickers and the British Navy have been building ships (especially submarines) for a hundred years or more. When the grandfather was a child, it was a steel mill town, and indeed, there is a slag heap outside the town as tall as the surrounding mountains.

The intrepid Cap'n and our gracious host found grandfather's baptismal certificate, the church and font where he was baptized and a house he lived in as a child. Pretty remarkable, all told!

On Thursday we visited the Museum of Science and Industry of Manchester, which was very interesting and well done. Since Manchester was the cradle of the industrial revolution, they have mills and engines powered by water, hot air, steam, gas, electricity... probably some powered by captive Americans if you look closely enough. It was very well done and very interesting. It's housed in five or six separate buildings which were originally was the very first train station in the world. My brilliant niece was most captivated by the elaborate setup of Thomas the Tank Engine, an old friend of hers.

I got to have fish and chips for lunch. No mushy peas.

Our gracious and generous hostess is a lay reader in the Church of England, and her parish has two churches. St Bartholomew's is the older of the two, and the current church dates from the 1500's, with a crypt dating from the 1200's accessible from a tiny circular staircase in the sanctuary of the current church.

PS on PH

A really cool article in the Wall Street Journal....

Life is full of surprises. And stuff.

So, I haven't posted for a little while, because I went to ENGLAND, and it was FABULOUS, but I'll write more about this later.

This morning, we went over to see the boat and maybe go sailing, since we hadn't seen the boat in about a month. It was indeed too windy to go for a sail, so we did some maintenance, and puttering around.

HOWEVER!

As I got out of my car, and fiddled with my equipment (oxygen, backpack, bottle of water, other important items), and Cap'n Bligh got all his equipment together, I stood up, peered down our familiar dock with its familiar boats, and said in an inordinately loud voice, "WHAT THE F*** IS THAT?!?!?!!?!???"


Remember, if you will, that our boat is 34 feet long, with a mast 51 feet above the water. The biggest boat on our dock is maybe 45 feet, with a mast not much taller than ours. What I saw was a bowsprit, (one of those long spear things that stick out the bow of a sailboat) that at its tip was as tall as some of the masts. And masts, taller than anything else by far, with a square-rigged sail at the top of one of them. It was HUGE. It was F***ING HUGE. And it was at the end of our dock.

Well, we marched ourselves down our dock, passing our boat hardly noticing if it was still floating or not, and we marched with our silly mouths agape to see a square-rigged, two-masted, one hundred seventy five foot long ship parked at the end of our dock. On the back it says "Clipper City."


One of our neighbors was on her boat, and she said, "You guys haven't been around for a while, have you?" And I said "What the HELL is this thing??"

She explained that it had come from Baltimore, repossessed by the bank from a guy. It obviously needs a LOT of work. A LOT of work. Clipper City was taken by the bank and they think they're going to get a million dollars for it.

Banks are so silly.

Boats are not investments.

Boats are for work or for fun. They only depreciate.

This one used to give rides in Baltimore Harbor, and the Coasties shut 'em down because the boat is not safe for commercial use. Lots of rust, bad fiberglass over wood of questionable quality, a huge maintenance nightmare, and it needs a crew of ten or so to ever leave the dock.

And the bank is paying our marina about $3,000.00 a month to park it at the end of our dock.

They're not using the pool, or the showers, or the gym, or having coffee and danish in the breakfast lounge.

Maybe next year our rates won't go up.

Welcome, HUGE Friend.

Brushes with greatness

This morning we went down to our neighborhood diner for Saturday brunch, which is a weekly treat. (BTW, our neighborhood diner has a previous brush with greatness all its own; it is the very place where the pretend cops caught the attempted assassin on "The West Wing." We watched the filming from our lawn chairs with coolers, and applauded each take from across the street.)

At the next table was a neighbor who has been a docent at the National Air and Space Museum for over twenty years, who is current not only on the exhibits at the downtown museum, but also on the huge annex at Dulles Airport, the Udvar-Hazy Center. Now, to be a docent at NASM, you have to go through three months of all-day-Saturday training, spend every Wednesday night at refresher clinic, and vow to spend at least 80 hours a year conducting tours and educational groups around the museums. It's quite a commitment. And the odd thing about our neighbor is that he isn't retirement age, which most of the docents are. We'd just decided that he didn't have a life otherwise.

He and his lady friend were sitting at their table, not ordering, because their friends had not yet arrived. We ordered, and got our coffee, when their friends finally arrived. It was an elderly woman from the islands, I'd guess Turks and Caicos, and a young man walking slowly with a cane, and two shiny new prosthetic legs. She was a volunteer from Walter Reed, and he was a patient on one of his first journeys out. He ordered a western omelet and a toasted croissant. They discussed loudly the relative merits of the two museums, and which one was best depending upon what you wanted to see (The Enola Gay is at Dulles; the Glamourous Glennis is downtown), and the differences in what estrogen vs. testosterone wanted to see.

I was in the presence of greatness all around.

And just when I thought it couldn't get any better, Brian Lamb walked in.

If you're not a C-SPAN junkie like my very self, maybe you don't know that Brian Lamb is an interview god. Brian Lamb occupied my every Sunday night for years uncountable, interviewing historians, political scientists and social critics of all sorts on his weekly show Booknotes, which evolved eventually into C-SPAN BookTV channel.

The Captain said he'd never seen me so excited, and he was a little jealous.

I mean, Brian Lamb is to Washington politico-geeks as Paris Hilton is to, well, whoever likes Paris Hilton. He's the top.

I feel so insignificant today. Some ice cream ought to fix that.

Some days you're the bug, some days the windshield...

Tuesday morning at about 7 am, I was driving up to the hospital for pulmonary rehab. I was listening to Mick Jagger sing about Brown Sugar, and driving my Very Cool Car at a Very Cool rate of speed.

Just as I came up to the exit to go to the hospital, The Evil Blue Lights of the State Police began to flash behind me, and I knew I was got.

I pulled over to the side of the road, and immediately grabbed my cannula and turned on my concentrator, while grabbing my license and insurance card.

When the State Policeman walked up to my car, he asked if I knew why he stopped me. I told him that I wasn't sure, but I was certain that he could tell me. I told him that I was absolutely certain that I was supposed to be at the hospital at 7 am, weakly pointing at my clock. (It was absolutely true, too. I just didn't say that you don't get demerits for being late to the gym.) He said I was going 61 in a 45 zone. I told him that was possible.

I looked as pathetic as humanly possible, which, when I'm going to the gym at 7 am, isn't all that hard.

He went back to his car, then returned, and told me that instead of giving me a big expensive speeding ticket, he was only giving me a ticket for "failure to obey a traffic sign." One that said "Drive 45 mph".

Today I am The Windshield.

Let's hear it for cannulas and looking pathetic.

My Father's Day gift.

My father is old.

I discovered he was old about ten years ago, when we drove away from the house after a visit and I burst into unexpected tears. My father was an electrician, and had always had strong hands and arms, and now, he had a constant cough and his arms were thin, and his hands were soft.

He's actually turning 75 in September, so he's not really THAT old.

But he has become deaf, and refused a hearing aid, preferring to have a disjointed conversation and keep the television at a jet-engine level. Unfortunately, he also has discovered the Fox Channel, and has grown opinionated in addition to being rather loud. And it is not unknown for him to burst forth in song in the middle of a conversation, since he can't hear the other conversant, therefore it doesn't exist.

For Father's Day this year, my siblings and I sent them a base station and four cordless phones, since the last time my brother called, my mother had to go through three different phones before she could find one that she could talk with.

I called him on his new phone to wish him a happy Father's Day. He thanked me, and we chatted on. He talked about a little neighbor girl who came to visit, who wanted to try on his oxygen hose to see what his air smelled like. He said that she was a lot like me, that when she walked in, she never asked for a hug. He said he had to convince her that it was a good thing to have.

He said that I never demanded a hug. He said that his lap was always full with another kid, and I never asked because I had been told no too many times already. He said I never got enough hugs. He said that he was sorry for that.

I still have a hard time asking for things. For help, for consideration, for a favor. And that's especially hard since I can't do everything now. I'm getting better but it is still very hard.

All this time I thought it was my fault. Thanks, Dad.

The Second Sail of the Season

Friday night we dumped the dogs at the kennel and took off east.

We hit the boat, unpacked and went to sleep rather early, anticipating an early departure.

Saturday morning dawned muggy, hazy but with a little wind. We left the slip at 9 am and headed north.

The wind never really rose above a couple of knots, so we left the engine running to assist us in our trip up the bay. It wasn't pretty.

At about 3 pm, we reached the Rhode River, and came around up to a small bay across from Mayo, Maryland.

By 5 pm, there were about 40 boats in this bay. A little more crowded that we had hoped. About sundown, a group of drunken powerboaters (stinkboats: sailboats are blowboats) tried to leave before completely securing their anchor. Idiots are so fun to watch.

We set up the gas grill and cooked some lovely pork chops, chicken breast fillets, and veggies. We then desserted ourselves with adult beverages. The Captain chose cheap scotch and cigars; I had Wild Turkey and Diet Coke.

After the sun set, we went to bed, for we were beat.

At about 2:30, I awoke with an irregular heartbeat. I could actually see the irregularity on the pulse part of my pulse-oxygen meter.

I thought very nasty four letter words. I did not wish to call the Coast Guard out to rescue me.

After watching it for a few minutes, I got up and went to the head (that's boat talk, you know).

When I came back, the captain asked if I was okay. Whining, I told him about what was going on. He lay silent for a few seconds, and asked "Do you think it has anything to do with that two fingers of Turkey you had before you came to bed?"

Hadn't occurred to me. Of course it might.

Went back to sleep. Awoke perfectly normally at daybreak.

Either I need to drink more, drink more often, or not at all.

We'll see.

We sailed home on Sunday afternoon, ahead of a cold front. It was very windy and rough, but we got back to the slip in time to be tied up securely when the strong thunderstorms came through. We spent the day on Monday doing boat chores; washing the boat, oiling the teak, cleaning the bilge, changed a pump in the shower bilge, et cetera, et cetera.

First Sail of the Season

It's been too rainy and cold and windy to sail yet, but today was supposed to be sunny and perfect.

It wasn't.

We went sailing anyway.

It didn't last long.

We left the dock at about 10 am, with gentle winds and a slight high overcast. We motored out down the channel, greeting the newly hatched ospreys who were peeking over the nest tops on each of the navigation markers as we went out.

When we got out into Herring Bay, the small inlet where our marina (and others) are sheltered, the wind picked up to around 10-15 miles per hour. Which is fine, not a big deal, but it was gusty. Gusty is not good.

When it's gusty, you trim and set the sails for what you think the prevailing wind direction and speed will be, then the wind shifts and blusters higher, and the trim you set only a minute before is completely inappropriate. When it's gusty, you spend all your time compensating instead of sailing.

When it's really windy, one's sails should be reefed, that is, trimmed downward so that the whole sail isn't released to the wind, but a smaller percentage of the sail area.

Women like to go out reefed. Men do not.

When we passed out of the gusty Herring Bay into the main channel of the Chesapeake, winds of about 35 miles per hour hit, bending the boat over getting the sails wet, the deck wet, the crew wet, and making the boat uncontrollable.

Captain Bligh, my husband, was swearing and struggling. I had the steering wheel turned all the way to the stops on the left and the boat was still going to the right. I told him to start the engine, and for the fist time all day, he listened to me and started the engine. As soon as the engine caught I threw it in gear and slammed the throttle forward. Mind you, throwing the throttle to the firewall on a 23 horsepower diesel isn't exactly the Indy 500, but it give you enough forward movement to give your rudder authority again, so you can steer. And I steered it straight into the wind, while Cap'n Bligh dropped the sails and we went home. Or at least to the dock. We had plenty of piddly little projects to keep us busy for the rest of the day, after our one hour sail.

But it was blustery. One measures the angle at which one is tilting from straight up and down on a sailboat by looking at a gauge that measures heel, or the amount you're leaning. We were up to 35 degrees of heel at one point in our short sail. And on the way back, with no sails up at all, only a bare mast, we were heeled over five degrees with a beam reach (a crosswind to you landlubbers).

And the doctor has me up to 12 Viagras a day now, to see if it improves my twinge.

Life is interesting, ain't she?

How I Spent My Wednesday Evening

On Monday and Wednesday afternoons, I have been attending a pulmonary rehabilitation class, learning how to exercise with reduced oxygen capacity. I have been quite successful in increasing my endurance and learning how to go longer by going slower.

On Wednesday afternoon this week, I had a progress six minute walk, and I walked 1705 feet, or 519 meters, which is about 100 meters further than I had walked earlier in the spring. I went pretty hard at it, since it was a one-shot deal and not trying to sustain anything. I got my heart rate up to 140 at one point, which is higher than I normally go, but not a lot higher. My oxygen got down to 90 percent, and I was breathing a supplemental 3 liters per minute of oxygen, so for you normal people, this would have been pretty exhausting. My body is actually used to it, so it didn't feel all that bad.

When I exercise hard, I have a small sore spot in the upper left quadrant of my chest. I was told some time ago that it was probably my pulmonary artery, since it was already under some high pressure stress, that the additional stress or exercise, or coughing, would make it further stressed. On Wednesday afternoon, it was a bit sore as usual.

When I got home, I picked up the mail, sat down on the couch and flipped open a laptop to look at some afternoon e-mail traffic, when I felt a TWINGE. In the upper left quadrant of my chest, in the same place it hurts when I exercise. It was sharp, it was short, it was instant, it was basically unremarkable except it made me cringe a little.

I wouldn't have paid any attention to it, except that in about 15 minutes, it TWINGEd again. And about every 15-20 minutes, it would do it. Not related to anything like breathing or pulse. Just TWINGE.

My husband came home in about 45 minutes, and we discussed what we needed to do for the evening, and I had another TWINGE. I mentioned it to him, and he immediately thought I should call the Cavalry. I said "It's only a TWINGE."

So, I agreed to call the on-call nurse at the PH clinic and see what she thought. She said to call the local EMTs and have them do an EKG and see if anything popped up, then to go from there. So I called the local EMTs. And they came screaming over the two blocks from the firehouse in the FIRE TRUCK, with all the lights and sirens and all that. All my neighbors came out. I waved at them. I waved at the EMTs. They asked if I was the patient. I said I was. They made me sit down. They did an EKG, and it wasn't remarkable. They were very impressed that I took nine Viagras a day. And I had no TWINGEs while they were there. Not a one.

So, I called the on-call nurse back and told her that we had decided we were going to go get some dinner and if I was still TWINGEing after that, we'd go out to the hospital.

We went out and got into my (wonderful) car. My husband promptly flooded the engine, which he does because he does not know how to treat a piece of machinery as marvelous as Miss Kitty, so I yelled at him to stop stop stop what he was doing. And I had a TWINGE. And another. And I said, "Screw this, let's go to the hospital."

So we drove out to the hospital uneventfully. I went inside and registered at the desk, and they promptly took me into the triage area and did a real big 12-lead EKG, not like the pesky 4-lead that the EMTs had. I chatted with the nurse, who had gout and had to sit down, and he told me to get dressed again and go into the waiting area until they had a proper examination room available in the emergency department. So I did.

When I went into the waiting area, I could not find my husband. I walked all around, looking at every face, but there was no one familiar to be found. Then, I heard a sound. A buzzing, flapping, whining sound, coming from outside. As I craned my neck to see the source of the racket, I saw whirling rotors attached to a Bell 412 descending upon the helipad next to the emergency room. And across the parking lot, I saw my husband, intently observing.

He had heard the discreet "code blue arriving by air, ETA 2 minutes" and gone out to observe this arrival. Since he is the head boy in charge of EMS helicopter voodoo at his job, he felt obligated. And he likes noisy things. And flying things.

It does not matter to him that his poor wife is inside busy dying of a TWINGE.

I told him so when he came in.

They came out and fetched us promptly, and I was moved into room 16, my new home-away-from-home. A nice lady came in and said she was Sue, a registered nurse. I told her I was Ellen, a registered patient. She and another nurse came in and started asking me questions and I answered them in way, way, way more detail than they were accustomed to, so they agreed to leave it to the doctors.

So Young Dr. Jesse came in. Young Dr. Jesse was about 12, I estimate. He claims to have been in the Navy, but I just don't see how that could have happened by age 12 if he also went to med school.

After I explained everything to him, he is leaning in the direction of pulmonary embolism. It is not the direction I would have leaned, but it is nonetheless a legitimate one. PH patients have a tendency toward blood clots and many of them are on blood thinners. I am not one, and I didn't have many of the other symptoms associated with clots in the lungs. However, this was the direction he decided to go, and I was along for the ride.

I told my husband to go home, because when I heard the list of tests they wanted to do, I'd done 'em all before and I knew how long they'd take. He can sleep at the drop of a hat, so I knew if he went home he could get a few hours rest anyway.

Under ordinary circumstances, they do a CT scan with contrast to look for emboli. But, as usual, nothing is ordinary in my world. I'm allergic to the contrast dye (which I found out when I had one once before and the tech said "Did you have that rash when you came in?" and I said "What rash?" and he said "Uh oh."). So instead, they did a doppler ultrasound on my legs to look for clots, a chest x-ray and a V/Q scan, which you breath radioactive stuff, then are injected with other radioactive stuff while they take portraits of your lungs.

The X-ray was uneventful, and the V/Q scan was uneventful.

The ultrasound was not.

The ultrasound tech was a little Filipino man named Gerry, about 60 I'd guess, chatty and grey haired. When the do the sonogram for clots, they take a picture of your vein, then they mash on it and get a compressed view of the vein. As Gerry pressed on my leg, I winced, because, well, it hurts. He apologized.

I was going to say "Oh, I read a book once by a man who was tortured and he told his torturers 'I can stand the torture if you can stand the screaming.'"

What I said was "Oh, I read a book..." and he cut me off and said "By Bill O'Reilly?"

No, I don't think I've ever read anything written by Bill O'Reilly. And I don't know exactly what this had to do with anything. Except maybe it would be torture to read a book by Bill O'Reilly?

Anyway, I don't have any blood clots but it took them until 3 am to figure that out. I called my snoozing husband and he fetched me home and I had a bowl of soup at 3 am because I still hadn't had dinner.

And I'm still TWINGEing. But less often.

Another Great Adventure

The tickets are bought.

My nieces and I have a deal that when they turn ten, we go on a great adventure.

When the first one turned ten, we took her to France to a wedding in Bordeaux.

Her sister turned ten last week, and we're taking her to England this summer. We're flying into London (because Virgin has free oxygen) and driving to Manchester to visit friends, and stopping by in Coventry on the way up or back. But we have no other plans.

Have you any suggestions of fun things to do in England with a ten year old that doesn't entail climbing a lot of stairs?

Porn of the best kind

So, my pal Pooks posted on her blog about bike pr0n, or bicycles for which she lusted.

I tried to make a link to Boat Pr0n but it didn't work.

This one does.

Have you any pr0n you'd like to share?

Spring, spring...

We went to the boat today for the first time.

It was clear and 80-ish and breezy, but still too cold to actually sail. That 80° ambient temperature on the land is tempered considerably when the wind is blowing across 50° water.

So, we cleaned up a bit, blew all the anti-freeze out of the water lines and refilled the onboard fresh water tanks, ran the engine for a bit, repaired a few things, and re-hung the dinghy on the davits off the stern.

I took a nap.

We took the dogs along. They are surprisingly well behaved, though Daisy was discovered standing in the middle of the dinette table searching through the condiment packets on the shelf next to the table. She is indeed evil.

We are tentatively planning to go over next weekend (Friday?) and spend the night on the boat, which is always very pleasant... waking up with the sunrise over the bay, and drinking coffee on the cockpit while the rest of the world gently wakes.

Or it may be too cold yet. Remember, the cabin of the boat is still sitting in 50° water...

My new favorite hymn

Oh, my glamorous life...

Saturday night my husband and I were invited to a private reception at the Australian Embassy in Washington, honoring and introducing a young entrepreneur who has brought her business to the United States. Her company does risk analysis and safety planning for helicopter medical services, something that is sorely needed.

Last time we went to one of these things, the chairman of a high-profile government agency walked up to me and said, "Young lady, your husband is a very smart and important person." It took all that is within me to say, "Oh yeah? So how come he hasn't cleaned out the basement yet??"

So, anyway, we spent most of Saturday getting ready to go to this soirée, and I had to go to TJ Maxx and see if there was anything there for me to wear. I had a skirt and a jacket but I needed a blouse that wasn't black velvet, since it's springtime and not wintery. He, on the other hand, had to put on his penguin suit. And that's all.

So we got all dolled up, and when we walked out our front door, our neighbors applauded.

We got into the Jaguar, which just looks all the cooler when the driver is wearing a tux, and headed across the river and up 14th Street to Massachusetts Avenue, and Embassy Row.

We got to the embassy on time, and he dropped me off and parked the car a couple of blocks away. We cleared security and walked in. And stood. For three hours. In uncomfortable shoes. And ate little tiny food. Crabcakes the size of your thumbnail. Tuna tartare on tiny little crackers. Little Australian lamb chops. Australian wine. American water.

Lots of people there telling me what an important brilliant visionary my husband is.

Presentations were made. There were no seats. My feet felt like they'd been hammered on the bottom. I found the only available bench, in front of a video art screen, a video of waves endlessly approaching the beach and changing color with each wave. I propped up my feet.

My brilliant and visionary husband didn't have that opportunity. He had to go make face time with all these people, who congratulated him (which probably makes your feet not hurt so bad). He went and got the car at the end of the three hours of standing around, and we went home.

We were hungry. We were tired. We had shredded wheat and went to bed.

Oh, I adore my glamorous life.

Spring is Officially Here

My husband is coming home from Australia today. I do not envy him. He has made the round trip in less than a week. That's hard on bodies that are no longer young.

He reminded me of the worst part of flying trans-Pacific; after you have a meal, a movie, and a nap, you wake up and look at the moving map on the overhead, and it says "Arrival in 16h 30m."

Aaaaagh.

Have I mentioned that I have the grandest commute in the universe?

I leave my house and immediately turn north on the George Washington National Parkway, a road that goes along the Potomac from near Chevy Chase all the way down to Mount Vernon, George and Martha's crib.

It is a National Park, so your speed is monitored by the US Park Police. It is also lovely. The Lyndon and Lady Bird Johnson Memorial Groves and Parks and all (I guess it ain't quite memorial for Miss Bird, since she is still kicking..). It is lovely and very well kept.

On the lower portion, near my house, the riverbanks are naturalized with daffodils, and weeping willows casually line the shore. As you drive up, the sun is rising over the Capitol, the Library of Congress, the Washington Monument, the Jefferson Memorial, and this time of year, the cherry trees blossoming around the Tidal Basin (otherwise famous for Wilbur Mills driving into it with Fanne Foxe). The early morning light turns all the stones at Arlington Cemetery a pale coral.

On the upper portion, the road follows a bluff alongside the river, and the river changes.

Down my way, it's broad and sluggish, and deep enough for small ocean-going vessels to come up as far as the Orinoco Street Wharf. But north of the Memorial Bridge, the entrance to Arlington Cemetery, the river narrows, in a little gorge, with rocks causing rapids. The high school and college crews are often rowing in that portion of the river, going from the boathouse in Georgetown down to the boathouse in Alexandria, always going downstream for some reason. I never see them trying to row against the tide.

I leave the parkway at Spout Run, a rocky little tributary with a tiny waterfall that I can see as I take the turn west to go to Fairfax. When it is raining, the tiny waterfall turns into a small raging torrent, rather like a ferocious kitten.

This morning as I drove up, I noticed that the daffodils were beginning to bloom, the willows were soft spring green and the maples were budding red. All this in the week since my husband left. His flight was delayed a day because of a sleet storm last weekend.

He'll be pleased to return tonight.

Revolution, uh, Doctor Number 9

So, now I'm seeing nine doctors.

One endocrinologist, one primary care, one pulmonologist (or somebody in his office), two cardiologists, two rheumatologists, one retina-specialist opthalmologist, and now, one gastrointerologist.

I went to see the GI guy because one of the symptoms of the alleged connective tissue disorder that I may or may not have is "esophogeal dysmotility." Like indigestion.

I've been conquering it fairly well with OTC stuff, until recently. But I was thinking I needed his help recently, so I made an appointment.

I walked into his office, and he was friendly and what-can-I-do-fer-ya and I said "I'm going to give you the five minute version of the last three years," and proceded to do so. At the end of five minutes, he cocked his head and said "You've done this routine before, haven't you?" He then started pulling out samples and writing prescriptions for me to try short-term, to get an idea of what might work well for me by the trial-and-error method.

For, as he said, "Normally, I'd suggest we do an endoscopy and see what's going on in your esophagus, but if I walk up to an anesthesiologist and tell him, 'Oh, I have a patient I need your help with who has Pulmonary Hypertension and a Pericardial Effusion,' he'd just gimme one of these," holding up his crossed index fingers vampire-repelling-style.

Evidently, you see, all the stuff I'm taking daily is what the anesthesiologists give to people going the wrong way during surgery. Anesthesia is hard on the arteries, and when pressures start getting high, they administer nitric oxide (which is an outcome of every drug I'm taking for PH) by a number of routes, including a touch of Viagra. So if things started going badly for me, they'd have nothing left to try.

Something I had always suspected...

You Are a Drama Princess

You're not over the top dramatic, but you have your moments. You know how to steal the spotlight... And how to act out to get your way. People around you know that you're good for a laugh. But at times, your drama gets a bit too much for everyone. Tone it down a tad, and you'll still be the center of attention.

Are You a Drama Queen (or King)?

The PHA and PHriends

The Pulmonary Hypertension Association (PHA) is the major lobbying group and research support organization in the US. It's kind of an interesting organization, because they sponsor research symposia for clinicians and researchers, and invite the patients. I've attended three of their gatherings, and the amount of information to be gleaned (most of which just flies right over my head) is amazing.

The other thing they provide is a place for patients (and caregivers and occasionally clinical professionals) to gather and "meet" each other online. This group is terribly important to those newly diagnosed who are scared at the prognosis and the odd treatments (the chance of having a pump permanently affixed to you isn't an everyday occurrance).

In a chat room one night, we discussed how nice it would be to be able to see one another, instead of just typing at one another. I volunteered to build a portrait page for us, and there will be a link to it in the bottom of this post.

Look at these faces. We don't look sick. Yet in the two weeks since I built the page, one of us has already died.

In the slideshow mode on this page, the faces and names just keep coming.

Most of us have never met in real life, never pressed the flesh. And yet, we are community. We have dark humor, bitch and moan about our husbands, and reinforce our mutual denial that anything is wrong with us.

When one of us dies, it cracks that denial just a little bit.

PH Patients

Random and pointless thoughts...

A mailing list that I've been a part of for over ten years is currently discussing whether sex is better if you're religious.

One poster (the self appointed list curmudgeon) said that sex wouldn't be good if you were an athiest. How could it be good, when at orgasm you cry out "O Great Nonexistent Void!" It would spoil the moment. It just would.

Another suggested that depending upon the gender of those engaged, a pagan yelling "Oh, Goddess!" might or might not be a Good Thing.




I did our taxes today.

It isn't cheap having a dread disease.

Those $20 co-pays for the doctor's office visits? Do one every week and they add up to over a thousand dollars.

My oxygen alone costs $1800 a year over the insurance coverage.

I had nearly $1500 in pharmacy co-pays. And that doesn't even cover the $4,000 for the infusion treatment.

Oh, and because the prednisone is making me insulin-dependant, the glucose test strips were $1200.

I am very thankful that we have good insurance. Very good insurance.

And strangely enough, it's nearly as good if you have no insurance. A lot of the companies will give you the stuff if you meet their criteria for give aways. Doctors will see you with little or no charge.

It's the folks in the middle who get hit. Their insurers don't pay "out of network" treatments very well, and they make too much money to get a break from the pharmaceutical companies or distributors. I have heard some horror stories from this middle group.