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.

Comfort Food

On Friday afternoon, I have to go to City Hall and pick up a Proclamation from the mayor that it is officially Pulmonary Hypertension Awareness Month in our town. I'm getting a couple of the grrlzz from the PHA national offices to come down for the photo op, and maybe my co-group-leader, and my husband armed with camera.

The Cap'n has some sort of bug and spent the day in bed today, but has arisen sufficiently to enjoy a bowl of chili and watch some tube.

And this weekend, our support group meets and I'm making a big pot to share for lunch.

If I do say so myself, I am a chili phenom.

Now, you must realize that chili is the ethnic cuisine of the Southwest. The headquarters of the International Chili Society is falsely located in San Juan Capistrano (wonder if they can make Swallow Chili?), California, when we all know it should be located no further west than Albuquerque.

So, when I make chili, it is in the manner of my ancestors. In fact, I send off for my chili seasoning because one cannot get it on the east coast. The Cap'n will often procure me some when he goes to the homeland, but when he cannot do so, the internet has become a mighty help.

I make chili in two-pound batches. Two pounds of lean lean lean meat, beef, or turkey, or bison, or venison, ten ounces of some sort of tomato stuff, and spices. This is what goes in chili. No beans. Beans may be added later, piled on top or under the chili, but no beans should be simmered in the chili. Ewww. Makes me shiver.

Tomato stuff is the great variable. One may use the generic canned tomatos, or Ro-Tels with their varieties of added chiles, or fire-roasted San Marinos...or if you're just flat broke, a thirty-cent can of generic-brand tomato soup will work.

In the spice department, one may add things like smoked paprika, or chipotle powder, or extra cumin, or even coffee, cocoa or chives. I've done all those things at one time or another.

But for me, chili is the true comfort food. The only other thing that compares is turkey and dressing in the comfort department.

In my town, there is one chili parlor that does a fine job. When I cannot, they always can. At one point they had an item on the menu that I tried, enjoyed and cannot ever do again. It was called "Atomic Fred." "Fred" was a quarter-pound fat short hot dog with chili, cheese, onion and minced fresh jalepeños. Holy cow. "Fred" gave me gastrointestinal delight (or excitement) for about three days. I can no longer do this. But it was magnificent. (I think they have removed Fred from the menu, perhaps due to fear of lawsuits.)

The day before election day

I voted a couple of weeks ago.  When you show up at the election board with a hose in your nose, they don't even ask, but just hand you an early balloting form when you walk in the door.

I don't really think it will make much difference who wins the top office.  The congressional elections will be much more interesting.  Congress is so screwed up that most of the federal agencies who were required to submit their budget requirements early this year (like before March) STILL do not have their budgets approved and are operating on continuing resolutions, which means that they can't do any project planning, because they cannot spend any money beyond what they spent last year.  This screws up things on all sorts of levels.  For example, if there is mass end-of-the-year retirements, the agency often cannot fill those positions.  So, if you want your food inspected, or your drugs tested, it's just not happening.  It would be magnificent if all the incumbents were defeated and lots of guys and girls with no preconceived ideas about how stuff should get held up for silly reasons. 

The nicest thing about election day is that it means that Inauguration Day shall follow, and this year, it comes the day after the MLK day holiday, so I shall have a four-day weekend.  Nice of the United States to provide me with this.

But the most interesting thing is that day-after-tomorrow, many, many  houses in our neighborhood will go up for sale, and they will all sell before January 20th.

Required PH Content:  Almost Every PH Patient Goes Undiagnosed For Some Years, Because Doctors Never Think About Testing For It.  Warning, Opinion follows: I think it's because the patients are mostly female, and doctors don't tend to take female patients as seriously as males.

So, when we last spoke...

I was talking about June, and t-shirts and such...

We didn't go on a real vacation this summer. We did go to the boat a few times, did a little sailing, but not as much as we would have liked. The first part of the summer was very hot and rainy on weekends, and then in August the weather turned cooler and delightful, but the Captain's schedule got very tight and left us little room for sailing. But we're leaving the Good Ship in the water this winter, so we can go over occasionally and spend a chilly afternoon, with the little space heaters doing a little something with the penetrating chill.

We did take the beagles over one day. Pedro is afraid to leave the boat, and is afraid to be picked up, so when you try to take him off the boat, you suddenly find yourself straddling the land and the sea with a wiggly 40-lb bundle. It's not good.

On the other hand, Daisy likes to leap for the dock. She has not figured out that sometimes the dock is closer to the boat than other times, and three times now we have had to fish her out of the bay by her slip-knot leash. Picking her up by the neck out of the water does not appear to faze her in the least.

So, in any event, my pulmonary function is improving, or is at least improved, to the point that my readings, dear reader, are as normal as ANY of yours, with a few tweaks. My de-saturation is almost non-existent, except in cases of extreme stress (like carrying heavy things up stairs). My doc has essentially told me to wing-it with the oxygen, so I have been going without more and more, so far without incident. I went to church this morning, sang out loud, upped and downed and all-arounded with no symptoms whatsover UNTIL I went into the restaurant at brunch and began to get a big flashing blue and orange spot in the middle of my vision. I have those most often when I am carrying things into the office from my car in the morning. I wasn't carrying anything at that time, so I'm not exactly certain what made me do that at noon.

Church was a little emotional today. All Saints Day (transferred from November 1) is the day they read the necrology, the list of all those who have died in the last year. My friends Loren and Viola, and most of all my friend Amy, were on the list, and it was all I could do to hold it together.

My friend Amy was diagnosed with melanoma a little before I was diagnosed with PH. She had surgery, treatment, and was treated with all the new meds, but last spring she got into a Phase I study at Johns Hopkins, and I knew, and she knew, that they only people accepted for Phase I studies were the ones for which there was no other hope. She looked great to the end, but two days after she graduated her oldest son from high school, and they had gone to Martha's Vineyard for a vacation, she lost her battle. She left her three sons and dear husband. I get survivor guilt every time I walk into our church, and it is neafly more than I can do. I had a friend who lost a child once, and she said the pain doesn't go away, but it does become expected.

And that's where I am. I expect to hurt when I see her sons, her husband, her house.

I received word that my friend Teresa died of PH this morning. Teresa was the daughter of an old friend, who was diagnosed with PH just after I was. Teresa had a variety of physical and emotional problems that made treating her PH almost impossible, and she decided a couple of weeks ago to stop her treatment.

My friend Sheila lost her father this week. My friend Rose lost her dad last week.

May light perpetual shine upon the souls of the departed. Amen.

Okay, so I have been negligent.  Sue me.

When we last chatted, O Theophilus, I had just had a new set of pulmonary function tests (PFTs) and a right heart catheterization (RHC) and everything looked rosy.

Well, everything remains rosy!

In June, the Captain and I attended the Pulmonary Hypertension Association's International Conference which is a biennial event, this year in Houston, Texas.  Now I ask, whose brilliant idea was it to haul a bunch of pulmonary patients to the Gulf Coast in June?  It was hot, it was humid, and when we got off the airplane, and stepped out of the terminal at Hobby, the first thing I saw (at four in the afternoon) was a lightning bolt nearby.  Having been gone from Florida for ten years now, I had forgotten the ubiquitous summer storms that form on the land and head for the sea every every every afternoon about four o'clock.

I met many of the folks who I knew only from here in the cyber-world.  I discovered that I liked ALL of them.  

Sometimes, when you only know someone from conversations online, when you meet them in the flesh, you're a little disappointed because the person you had created in your own imagination didn't quite measure up.  THIS WAS NOT TRUE FOR EVEN ONE OF THE FOLKS I MET IN HOUSTON!

I had an inkling of that before we left.  My pal Annette and her charming husband Rod had a couple of days in Washington, away from their home in Omaha, before we both were expected in Houston.  We went and kidnapped them from their hotel and took them out to breakfast and a quick tour of Alexandria, then dumped them back at the hotel so they could take a noontime cruise up the Potomac.  And they were FABULOUS!  Made me know that Houston was going to be wonderful as well.

And another reason that I was a little eager to go is that I had, once again, agitated in an unseemly manner, the rabble into a rouse.  One night we were chatting in the Pulmonary Hypertension Association's chat room, and a newly diagnosed woman said "I'm changing doctors.  My doctor doesn't like me.  He wrote on my chart that he thinks I'm an SOB!" We all laughed, and explained to her that SOB was shorthand for "short of breath," in the same way that dx is diagnosis, px is patient, rx is prescription, etc.  So then, we began to talk about what a bunch of SOBs we all were!  And thus was born...

The SOB T-Shirts.

I went to a t-shirt website and started playing, and came up with a black t-shirt that read, in small pink letters, "I'm a little" and in HUGE Purple Letters "SOB." 

Then I made one for the Captain, that said "Someone I Love is a Little SOB," and one for all of my medical folks that said 'EVERYONE I Know is a Little SOB." And I posted a picture of them on the PHA Message Board.

And I sold over two hundred of them.

And they were all worn on Friday during the PHA Conference.  That was about 20% of the attendees.  In the linked picture, you can see me in a conference on travelling with oxygen where I was a panelist, and you can gaze through and find a LOT of pictures of a LOT of people wearing a LOT of black t-shirts.  (The ladies depicted are the nurses and respiratory therapists from my PH clinic.  Oh, and that's me being the poster child.  A long story for later.)

All proceeds paid for the Northern Virginia PH Support Group's Website.