Monday, June 29, 2009

Our Goodbye

When I heard about Mason's death a couple of weeks ago, I knew that I needed to go to his service, however and whenever.

Last Friday morning, I left home at 4:30 am to catch a flight to Las Vegas. Fortunately, the US Department of Transportation rules no longer make it necessary to jump through excessive hoopery to take an approved oxygen concentrator on a flight, so I can again travel with a minimum of excess hoo-hah.

Arriving in LV, I went immediately to the Hertz counter, and got my car which had a bonus GPS navigation system, so I plugged in the address of the hotel where my reservations lay, and took off across the desert.

Driving south from Las Vegas was a first-time experience for me. I found it hard to believe as I went down US 95 in my air-conditioned car, that the 116 degrees showing on the external temperature sensor was accurate. I didn't see mirages, or heat waves rising off the road. It was just sunny. Relentlessly, insufferably sunny.

Searchlight, Needles, Bullhead City all flew by on the road.

Finally the turnoff for Lake Havasu City, and the road south. The landscape was scarred with dirtbike trails, and I got a better idea of why he loved them.

The town is brand new and dusty at the same time. It's a planned community, 45 years old, so nothing has any sagacity in its look. The water of the lake is incredibly, artificially blue, not unlike the ocean off Palm Beach. In PB, I always wondered if the rich folks had had the water tinted. I didn't find any evidence of rich folks in LHC. Just lots of good solid middle class sorts.

I saw Catalina when I walked into the hotel lobby, and was told that Marcia had already checked into our room. Marcia had kindly hit the grocery on the way in, and bought snacks and a good-sized bottle of margarita premixed, which we did a good job on that night and the next.

On Saturday, we rose late and had breakfast, then proceded to get ready for the service. We didn't want to arrive too early, but when we arrived 20 minutes before, all the seats were taken, and folding chairs were being brought into the chapel and into the lobby where a video feed was available. Lots of folks in memorial t-shirts, lots of folks on scooters and wheelies, on walkers, with oxygen hoses. The dirtbikers, and the PHers, all together maybe 200 people.

First to speak was his older sister, then his flight instructor, then his boss at the motorcycle shop where he had worked. Each of them described precisely the Mason we all knew; sly, funny, mature beyond his years, laid back, and resourceful.

Then his dear mother stood up, and in her agony, she brought up all her own hurts and pains, and it was hard to watch, and hard to see.

After she was seated, I stood and read my own blog posting from below here, and a card from my pal (and Mason's) Colleen, which said all the right things. Many people thanked me for our messages.

We went to a reception in a nearby restaurant, met with his family and friends, renewed acquaintance with Mack and Mary (and mini-Mack), and explained our idea of the Mason Hoffman PHA Scholarship Fund, a fund for young adult PH patients (18-24) to help them and their caregivers to attend the biennial international conferece, in honor of the way and place that most of us first met Mason. His family is thrilled with the idea.

We left the restaurant and went to the hotel to cool off and recoup... it was tiring emotionally and physically. We went to be pretty early, but not after chatting in the PHA chat room for a little while.

On Sunday morning, we woke up and had breakfast together, the Three Musketeers, and then started on our journeys home.

I had done pretty well for the whole weekend, until I was headed out of Lake Havasu City, and the old "Mike and the Mechanics" song "In the Living Years" came on the radio, and I cried all the way to Needles.

Say it loud, say it clear
You can listen as well as you hear
It's too late when we die
To admit we don't see eye to eye.

I got on the plane about 3 in the afternoon, and walked in my front door at 1 am. A long hard trip, but a very satisfying one.

Thursday, June 25, 2009

New Car

Miss Kitty, the Jaguar, has gone to her reward. Or to Trade-in Heaven, whichever.

She was to be inspected for safety in June, and I knew a couple of things which were not going to pass. However, when the mechanic called and told me the extent of it, well, it was apparent that Miss Kitty was going away.

(For the mechanically inclined, she needed new tie-rods, and in Jaguars, they're a single unit with the rack and pinion. She needed lower ball joints, a thousand dollars worth of tires, brake pads, and the air conditioner was acting funny.)

So, I started looking at all these deals out there... everybody wants to sell you a car. I had never had a new car, but the inducements made me look.

I looked at the domestic market, but the combination of what was available, what was offered in financing, and the prices simply didn't excite me.

I don't generally like Japanese cars. I feel a little sardined into the tin canniness of them.

New European cars are outside my budget.

Until I looked at Volkswagen. I looked at what was available, and the prices were very reasonable, the financing was competitive, and I went to test-drive on Monday.

I drove a Beetle. It was cute, and fun, but it wasn't very comfortable. I couldn't imagine driving hundreds of miles in it. We walked around the lot, and I looked at Jettas, Rabbits, the CC, diesels and gas. I told Pavel, our salesman (freshly from Russia), that I'd like to see a Jetta with a beige interior. He laughed, and said that he knew why; his car is black on black, and he had only recently discovered the joys of American summertime on dark seats.

Tuesday he called and said he had a red one and a white one. I went over and drove the white one, and really liked it. I filled out the paperwork to get the ball rolling, and made application at the same time at our credit union. Tuesday night, we went back to the dealership after the Cap'n got off work, and told him that the white one was the choice, and he offered us a better interest rate than the credit union, so we signed the papers, and on Wednesday at noon we traded both Miss Kitty and the ancient decrepit Volvo (dog and outboard motor car) for a shiny white Jetta named SeƱorita Bianca Jetta. And for the very first time, at the tender age of 51, I have my first new car. 17 miles on the odometer.

She has ball joints, rack and pinion, tie rods, air conditioning and all the things Miss Kitty was lacking. Additionally, she has a built-in satellite radio, so that I don't have to bring it back and forth from the boat any more, and bluetooth hands-free for the phone, so that I don't have to try to find another hand for the phone.

She is zippy, and responsive, with a 6-speed automatic transmission.

I don't look as cool as I did in Miss Kitty. But the a/c keeps me cooler.

The Cap'n is going to add a 12v plug inthe back for my oxygen... she came with only one.

And we still have The Cap'n's Batmobile for looking cool. And no, his a/c doesn't work either.

Monday, June 15, 2009

Dear Janet and Dale,

I cannot imagine the emptiness you feel with the loss of Mason.

I can only tell you that he has been a part of my daily life for the last three years or so, and that he is the bravest person I've ever known.

We had a special relationship, because he is a smart ass. And people tell me that I tend that way, as well. We harrassed and insulted one another, mostly for sport, but also because we felt safe with one another. We also talked about treatments and symptoms, what a pain insulin was, how steroids destroyed any chance of sleep. (and why we were both up at 3 am...)

One cold Saturday afternoon, I watched a really awful movie on the Comedy Channel, "Bad Santa." The movie was set in Phoenix, and one of the central characters was an odd quirky little fellow named Thurman, who lived with his deranged grandmother "Grammie" who was played by Cloris Leachman. When I saw Mason in chat that night, I asked him how much he had made starring in that movie as Thurman. He immediately told me that he made more than I did playing Grammie!

And so it began.

Thurman's wish in the movie was for a stuffed pink elephant. I threatened to send Mason a stuffed pink elephant, maybe a thousand times; "Young man, if you don't straighten yourself up, you're getting a pink elephant in the mail."

We talked about his bucket list. He talked about coming to Washington DC last fall, but a hospital stay and his continued weakening prevented him from travelling. So, we did some virtual touring, me showing him pictures of some of the monuments, and where they were in relationship to really good pizza places.

He told me a couple of weeks ago he didn't think he was going to finish his bucket list. I told him that it was okay, most folks never even got around to making the list. I think he understood that living as hard as you can, as fast as you can, sometimes didn't take a lot of physical motion, that living intellectually on the edge with an open mind ready to absorb whatever the world had to offer, this was a rich life as well.

He knew every corner of the internet. He knew more about his disease, his treatments, and sadly, his prognosis than most of the doctors I know. He knew how to make friends, he knew how to judge character quickly. He had unattractive nicknames for some of them that made me howl with laughter.

And in the last weeks, when he was too tired to sit up and chat, and we knew he was very sick, and rightfully depressed, we, a bunch of old fat women stuck in our recliners decided to cheer him up. So when he came into chat, I told him that we had decided to all chip in and buy him a hooker, and precisely which sort did he like? Was he more the Laura San Giacomo sort, or the run-of-the-mill Julia-Roberts-Pretty-Woman sort? We bugged him for several days about having one show up in a nurse's uniform, so you wouldn't suspect anything. I am ashamed to tell you that he thought this was hysterical.

And now, there is no more.

I am fairly confident, however, that when I go to Our Father's House where there are many mansions, there is going to be a tall skinny kid on a dirtbike destroying my carefully manicured landscape.

Rest in peace, Thurman.

Sunday, June 07, 2009

So I'm a slug. Sue me.

At the end of March, the Cap'n had a presentation to give in Vancouver, BC, and I decided to tag along.

It is not good form for us to travel together when I'm tagging along for conflict of interest reasons, so he took one airline and I took another. We were scheduled to land in Seattle within a few minutes of one another, and then we would drive on to Seattle.

I had rented a car for us, because when the Cap'n rents a car on his gummint credit card, no non-gummint folk are allowed to ride in it. Even a taxpayer like me. I had all the paperwork with me.

Then it began to snow in Chicago. The Cap'n took off for Denver. I sat in Baltimore. Three hours late, we took off, and I arrived in Chicago which had only a tiny fringe of snow on the ground. Bah!

I had missed my connection to Seattle, but the next one was in six hours. I had my oxygen concentrator, my meds and my computer and phone, so I was in reasonably good shape to occupy myself for a few hours. I was able to call the Cap'n and text-message him, keeping him apprized of my situation.

We decided that he would go get a hotel room near the Seattle airport, get some sleep and I would call him when I knew what time I would be arriving. He would ride the shuttle bus back to the airport (since, after all, I had rented the car in my name, he couldn't pick it up), fetch me, get a car, and we would get a few hours sleep, since he had to give his first presentation in Vancouver at 1 pm.

Six hours came and went and still I sat there. At about 8:30 pm, I finally got a boarding pass for the flight to Seattle, and we left about 10 pm, arriving in Seattle after midnight. I walked the length of the airport (wheelchair service after midnight?? fugeddaboudit) and spotted the faithful Cap'n waiting for me. He grabbed my bags and we headed to the Hertz desk.

Hertz (smartly, on many levels) had decided to do server maintenance at midnight Pacific time on Sunday night. Which was when we were trying to get our car. The nice lady (and she was extremely nice) had to hand-write our rental contract, instead of spitting it out in ten seconds, it took closer to an hour to get it done.

We got into the car, and went to the hotel, which was really lovely as next-to-the-airport hotels go, and I stripped out of my nasty airport-soiled clothes and took a shower and took my meds and fell in bed, TWENTY-FIVE HOURS after we had been alarmed into action the day before.

We slept for about six hours and then took off for Vancouver. I had realized during my long sojourn in Chicago (nine hours gives you plenty of time to think) that I had failed to pack a coat. I assured myself that I could buy something in Vancouver.

The drive was really lovely, that typical northwest overcast, tall mountains still snowcapped, logs floating in waterways, lots of boats.

We were using my phone and its navigation system for our mapping, and we were successful until we passed the southern sections of Vancouver. Then I discovered that there is no CDMA coverage there. We have a GSM phone, but it doesn't have the nav capability, and the Cap'n 's gummint phone isn't allowed to have any external apps... so we were sorta without direction. Except, the Cap'n had actually been to the conference, in the same hotel, before, so he had some sense of where it was.

We did take a wrong turn, and had a lovely tour of Chinatown. Finally, we found the hotel and I quickly determined that, yes, I would be able to find something to wear in Vancouver, for in the lobby were a couple of stores I recognized, St John and Gucci. Yes, indeedy.

This is the nicest hotel I've ever stayed in. The concierge desk has yellow labrador retrievers you can check out for a walk. The Cap'n wanted them to come sleep with us, but I begged off. There are bowls of apples everywhere for your snacking delight.

I did check out Gucci and St John, but there was a third store which was more the right direction, however, the first thing I saw when I walked in was a ranch mink shawl, dyed pink, for $2500.00. Which, in case you didn't guess, is generally out of my price range. And taste. However, I headed for the mark-down table and found a chocolate brown cashmere wrap, which was half off, but it WAS half-off, and it WAS Canadian money, not like real money, so I bought it. And it is gorgeous, and light as a feather and very warm at the same time. And I told the Cap'n that in the case of my untimely demise, he should save it for the next Admiral, for she would also appreciate its loveliness.

I walked downtown in it, down to the city centre where they were having a Cherry Blossom Festival, without actual benefit of cherry blossoms, but with a variety of Japanese drummers and Okinawa rock n' roll.

Despite Chicago, it was a fun trip, and we got to see a bunch of folks we hadn't seen in a long while, folks whom I had met in Washington at various times.

We came home after the first of April, from snow in Vancouver to sunshine at home. We took our first sail of the season toward the end of April, knowing full-well that it was a great possibility that the weather would be horrid. We lucked out: it was spectacular. Nearly 90 degrees, but the water is still in the 50s and 60s, and the breeze coming across the water was sublime. We went to Oxford, MD (near Cambridge, strangely enough), and stayed at the marina there. We called a local restaurant and they came picked us all up for dinner (seven boatloads of us!) in their van, and we enjoyed dinner together. When we returned, and got ready for bed, a thunderstorm blew through with 70 mph winds. We were on the end of the dock, tied on only one side, and the wind hit us abeam (broadside), so the boat was rocking and creaking and rolling, and the Cap'n was skeered but I laughed at him. I'd tied the boat up and I knew it would take more than that storm had to offer to pull us off the pilings.

One of the most fun things to do during a storm on a boat is to turn on the communications radio and listen to the people panicking. I mean, you KNOW that the storm isn't going to last more than ten minutes, and you'd think these guys were with George Clooney in the north Atlantic.

And this one was even better.

In many of the mid-Atlantic towns, the street closest to the water is often named 'The Strand," which I think is one of the coolest addresses one can have: "12 The Strand, Oxford, Md." And Oxford is no different. The Coast Guard maintains a small office in Oxford. It does not appear to be the desired station for the Kingspoint valedictorians compete for.

In the midst of the storm, while we were rolling and creaking, across the radio came a call from a sailing vessel to the Oxford Coast Guard station. After two or three calls, the station answered, and the sailing vessel said "Look, I'm anchored right off The Strand in Oxford, and a motor yacht has come loose and is drifting toward the rocks. It just missed me by twenty feet or so, and it's going to cause some real problems out here." Silence from the Coast Guard station, then a very young voice asks "Do you have a GPS position for your vessel, sir?" The sailing vessel replied, not without some disgust, "I told you I'm anchored off The Strand. My navigation equipment is turned off right now, but if you want, I can certainly turn it on again, but it will take several minutes to do that." More silence. "Okay, thank you sir for your GPS position."

The sailing vessel said "Okay, I'm turning on my GPS, but in the mean time, I'm two blocks from your office and you could come out here and see what the problem is before I get enough signal to give you a position." Silence. "Do you have your GPS position, sir?"

More silence. Then the young Coastie said "Sailing vessel, do you see some bright lights on the shore? " The man in the sailing vessel said "Yes, your headlights are shining right on my boat, and the one that's loose is that one over by the rocks on my port side!"

I half expected the Coastie to announce that he couldn't go outside because it was raining.

Anyway, all's well that ends well, the motorboat didn't go up on the rocks, although our pal Tom had his dinghy flip, and drenched his outboard, and lost his oars. Quel dommage...

We did a Memorial Day sail further south, and had a good time. We made stops in both the Little Choptank and the bigger Choptank Rivers, then sailed home on Monday. No excitement, but a treat of Matzoh Brei for breakfast on Monday morning... a "stone soup" sort of arrangement where one boat had matzoh, one had eggbeaters and one had a Vidalia onion. Yum, YUM!

I have my own batteries on the boat, so I no longer worry about not having enough oxygen for sleeping "on the hook" (on the dropped anchor, rather than at a marina with electrical power). I experimented with the length of the batteries with both the oxygen concentrator and the CPAP device, and neither of them came close to draining even one of the batteries while plugged in all night. Further, we have gotten another television which is AC/DC so if I want to watch TV while on the hook, I can do that, too!

My health is reasonably good, I will have another echocardiogram in August, maybe a right heart cath to get into a new study this fall, but so far, so good.

Saturday, March 07, 2009

The March Report

I'm okay.

In January I had another sleep study to study the dental appliance we bought last year to cure me of my mild sleep apnea.  It cost a house payment and a half, and no, it was not covered by insurance.  

My sleep study indicates that not only is it doing no good, I'm actually a little worse.  They did not turn on my oxygen during the study to see how low my oxygen would actually go, and it went to 67%.  So, I get another sleep study in April, and probably do the C-PAP thing.  Ugh.  

I lost my friend Anne Caesar in February.  Anne was a PH patient with scleroderma, a physician, had a wicked sense of humor, was Greek to the core of her bones, and I miss her awfully.  Remember Bruce, her husband, as you will.  He was her caretaker and her enabler for the last few years, they were necessarily inseparable, and he is having to find a new way.

Now, I'm going to say something, and those who have ears should hear.

Life is short.  

There is some need, in some folks, to complicate their lives.  To invent crises, or persecutions, or to simply waste the lives they have enjoying their maladies, celebrating their sickness, creating a career of victimhood.  They invent complication, and drama, and make public demonstrations of their righteousness, and how they have been wronged.

I reject this.

I deal with my disease, and I try to help others deal with theirs.  It is not my focus (despite what this blog may look like),  and I refuse to enable this in others.

It reminds me, not attractively, of middle-class women, sitting in their Laura Ashley living rooms, declaring their solidarity with the oppressed masses due to their own oppression by male hegemony.

Utter bullshit.

Sorry, gang, but when you decide to play your games in public, making dramatic entrances and exits announcing your victimhood and oppression, I have only a couple of words for you.

Grow up.

Saturday, February 07, 2009

Happy New Year!

Sorry it's taken me so long. Many things going on.

I quit my job on New Year's Day. About three weeks before, the CEO of the company I worked for, who had spent the last ten years being as demeaning, condescending, and patronizing as is humanly possible, finally hit a new low and told me that I had been "a charity case since I had walked in the door."

Everyone who knows him, and who heard this, thought it to be completely within the range of believeability, and the first word out of all of their mouths was "Napoleon."

So, Josephine has chewed about all the fun out of that gum possible.

So, as of 2009, I am DC HelpDesk and have never been happier.

The thing is, the technology has finally caught up with me, so I can do remote computer aid and repair from my recliner, on the days that I feel like doing that. Before now, it was necessary to be part of a large organization to have secure remote connection to other computers, but now it is possible to do this as an individual. Whoopee! I have a couple of customers already, and it's really very nice to be able to schedule around doc's appointments, naps and other things that life throws in my way.

This also means that we're having a little less income, but we're behaving on a budget and so far, so good.

We spent Christmas in Massachusetts, also our 25th wedding anniversary. We spent some time in Old Sturbridge Village, and with my family closer to Boston. It was VERY fun and actually the best holiday we've had in years.

I'm now helping with another PH support group in our area, with the inability of the former leader to continue, so planning for two isn't much different than planning for one.

My PH is actually doing rather well. My doc told me that I could use oxygen "at my discretion," so I still sleep with it, and use it in the gym, and later in the day when I'm tired, but not much else. I now own my portable concentrator, due to the changes in Medicare and the insurance companies following suit, so this will actually make travelling much easier for me. My oxygen concentrations were getting so good that the insurance company was actually questioning whether they would pay for my oxygen any more, so now that I don't have to worry about them, I can just cut loose. Also, the FAA has changed the rules so I don't have to notify the airline that I'll be using the concentrator, effective in March.

If I am very lucky, I will get to accompany The Captain on a business trip to Vancouver, BC in March or April, and I will be very pleased to do so, since my pal Jas lives nearby on Victoria Island, and we meet up, chat and do girly things. Like margarita therapy...

More later...

Tuesday, November 18, 2008

Intergalactic Pulmonary Hypertension Blogging Day

Today has been declared PH Awareness Blogging Day.

I am very tired. It's been one of those days.

Tomorrow will be a better day.

I have three pals in the hospital because they have Pulmonary Hypertension.

Let's find a cure so that so many very young, vital people don't have to die.