Skip to main content

The hives are back

Last night about 2:00 am I woke up to my ostomy itching. Bleary-eyed, I figured it was about to spring a leak, rolled out of bed, and squinted in the dark as I flipped on the bathroom light, and proceeded to change the ostomy. It’s two days early, but then again it’s summer and sometimes when you sweat these things need to be changed more often.

As I cleaned the very itchy skin I noted bumps – lots and lots of bumps – that were quickly melting into one huge bump all around my stoma. As my eyes became more adjusted to the light I could see the skin looked bright red, and there were little white raised bumps amid all the red bumps. My face started itching, then my arms, and the rest of my stomach, and my back. Intense itching – I could almost stand there and watch the blotches appear.

I started to have a scratchy throat, and cough some, so I quickly finished changing my ostomy and went for the big dog hive drug – hydroxyzine. Since I was coughing I thought it wise to jump ahead to the stuff I knew was going to work. Living alone, I worry when these things start to happen that suddenly I’ll find myself unable to breathe, and no one will ever know.

The hives were gone within a half hour. That drug knocks me on my butt, to be blunt. I barely made it to work. I felt as though I were drunk this morning. I couldn’t walk a straight line and felt sooo, sooo groggy. And, it’s major deadline time (thus the lack of blogging.)

Standing at the sink last night and realizing I was having another hive outbreak, the tears started to come. It wasn’t that hives are such a horrible problem. It was more that I’m afraid if this keeps up they’ll decide I’m allergic to the study drug and take me out of the protocol. I really don’t think that’s the problem.

I debated about whether to even mention it to Kevin, but decided the outbreak was so intense I had to tell him. This is a study. These things need to be recorded.

He called today to check up on me and how I’m doing with the study. The film crew was there and wanted to film him making a study patient call. Since he knew I wouldn’t mind (my medical stuff is an open book) we did our little meeting over the phone for the cameras. I’m not sure if they just filmed Kevin talking on the phone, or if I was on speaker phone. No matter. I was way more worried about the hives.

Later this afternoon Kevin called me back to double check that there wasn’t anything else I wanted to discuss out of ear shot of the cameras. It was so sweet of him to think of that, although had there been I would have called him back without hesitation that morning. Grin.

During our meeting Kevin also brought up the problems with the arthritis drug. Once again I made it very clear that I can live with joint pain. If it’s really a problem, I won’t take the stuff.

It makes me so nervous.

It also makes me nervous that my asthma-like stuff seems to be very kicked up right now. I’m actually back to keeping that albuderol at arm’s length no matter what.

Later this afternoon I realized I had another new drug that we’d discussed two weeks ago when I started it, but that I forgot to put in my drug bag today. Geesh…..managing all this medication is getting to be quite a chore.

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