Skip to main content

Allergy coma

I’m feeling really frustrated right now. I’m going out tonight to a friend’s house to socialize with a bunch of other people – something I really need to do I know – but I don’t feel like I deserve it. I have been such a lazy butt this weekend!

It’s this damned allergy medicine! (Coupled with existing fatigue issues of course.) It didn’t seem as bad when I was in San Diego with Donna, but I think that was because there was someone around talking to me and offering stimulation. Left to my own devices, I seem to sort of zone out and before I know it hours have passed.

This morning I got up, got dressed for church and was ready to go. There were about 20 minutes before time to leave, so I made the critical error of sitting down. Next thing I knew it was almost noon and Aunt Sheryl was calling on the phone. Thank God! Who knows how much of the day I would have wasted!

I fixed myself something to eat and then got online and spent an hour on HPS-related tasks – checking the newsgroups, answering e-mail etc.

I then went to the store to get some groceries. That ate up a good chuck of time, especially since I had to stop and repack my grocery cart once I was out of eyeshot of the cashier.

No one seems to get that I bring my own grocery cart because I’m walking, so they always want to pack my groceries into one of their carts. I, of course, want them packed into my cart.

On this particular day the sacker at the check out was, well, not the brightest guy ever. I tried explaining to him that the heavy things needed to go in the cart at the bottom, and the light and fragile things needed to go on top. So, he proceeded to put my bread and toilet paper in the bottom, leaving the bottled water and diet coke on the counter. As I was trying to nicely help him pack the cart (and rearrange things so as to not get home with smashed strawberries and grapes converted into grape juice), the cashier decided to exercise her supervisor status and get into the act. I think we would have been fine if she hadn’t intervened, but as soon as she started to boss the sacker around, all hell broke loose.

The sacker started shouting at the cashier that he knew what he was doing and she shouldn’t tell him how to do his job. She proceeded to tell him who was in charge and that he wasn’t doing it right. Meanwhile, I’m just trying to get the heck out of Dodge and pack my cart my way while the two of them are distracted. The argument didn’t last long enough, and as he resumed packing my cart (making me cringe). I decided that it was best to let him do it his way.

It seemed pretty obvious that there was some job coaching that needed to be happening, and it wasn’t. I had a feeling this poor guy was having a rough day, so I let him pack the cart, and then once in the parking lot, dismantled the whole thing and repacked it. My bread is a bit smashed, but oh well.

It’s getting rather hot in Kansas, so the walk home in the midday sun was HOT! I’m not used to this sort of weather yet.

I got home feeling completely spent just going to the grocery store! I put the frozen things away and sat down to drink some water. I fell asleep at the table.

My house looks like a freaking war zone! I’m feeling pretty good right now, and I should be staying home to clean. I should be spending tomorrow running errands I never have time to run, but I’ll spend it cleaning instead. And even then I probably won’t get it all done.

My back porch is also really starting to bug me. It looks horrible, and the lady upstairs was sweeping off her patio and planting flowers. I’m sure she just loves looking down at my little space – no flowers, ivy growing out of control, flowerpots stacked up and dirty yard furniture strewn about. But, I know that getting out there to cut things back is going to take me days because I know it’s going to set off my asthma like crazy.

I could never own a house unless I’m making enough to pay a gardener. I’m very, very allergic to grass etc. There’s no way I could take care of a yard.


Needless to say, it's now time to go and the bathroom isn't clean, the laundry is still on the couch and my paperwork is all over the dining room table. Nothing has been dusted, mopped or vacuumed. And, really, all I want to do right now is go to sleep.

Comments

Popular posts from this blog

Ratner's Cheesecake

Here's another recipe from Toby! Thanks Toby......and I'll get the others posted soon! Ratner's Cheesecake and plain cookies Ratner's was a Jewish dairy restaurant in the lower East Side of Manhattan. This recipe, from my disintegrating, no longer in print Ratner's cookbook, is the closest I've ever gotten to reproducing the rich, heavy cheesecake my mother made when I was a kid. It's worth the time it takes to prepare and every last calorie. Dough Can be prepared in advance. Makes enough for two cakes. Can be frozen or used to make cookies – see recipe below. 1 cup sugar 1 teaspoon vanilla extract 1 cup shortening 1 teaspoon lemon extract 1 cup butter 2 eggs 3 cups sifted cake flour ½ teaspoon salt 2 cups all purpose flour 1 teaspoon baking powder 1. In a bowl, combine all ingredients with hands. Refrigerate 3 -4 hours, or preferably overnight. Filling (for

The next generation with Hermansky-Pudlak Syndrome

I'm so behind on posting about the trip to Puerto Rico. Since the episode of Mystery Diagnosis on Hermansky-Pudlak Syndrome ran right after we got home, it's been a little busy. These, however, are my favorite pictures from Puerto Rico. I know, not pretty senery etc - but these little guys and gals inspire me. They are the next generation of folks with HPS, and if we keep up the hard work, they will live better lives because of it. They motivate me.

Some good news about Pirfenidone

Below is a press release from Intermune, the company that makes Pirfenidone. They have essentially reviewed the various clinical trials going on, and decided that Pirfenidone is safe and well tolerated. That would pretty much go along with what we've observed in the HPS community as well. We have a few folks that have been on the drug since the late 90s and continue to do well. Of course, as a journalist, I do have to say consider the source - but at the same time, as someone in a Pirfenidone trial, it's good to know. Results of Comprehensive Safety Analysis of pirfenidone In IPF Patients Presented At European Respiratory Meeting - Analysis shows safety and tolerability of pirfenidone across four clinical trials - VIENNA, Sept. 14 /PRNewswire-FirstCall/ -- InterMune, Inc. (Nasdaq: ITMN ) today announced that the results of a comprehensive review of safety data from four clinical studies were presented at the 2009 European Respiratory Society Annual Congress in Vienna, Austria