Skip to main content

It’s a mental challenge

I am usually a pretty even keel sort of person. I don’t have a lot of rapid mood swings or have extremes. Since learning I need a lung transplant and have to leave my community here, however, I’ve discovered this battle is as much emotional as it is physical. Sometimes lately it’s been an hour by hour fight.

Sometimes I feel very confident that everything is going to be okay. This process will require not just one miracle – getting new lungs – but lots of little miracles along the way. So far, it is as if all those little miracles are just falling into place one after the other. It feels like no matter how long the odds, somehow everything will work itself out and be okay.

Other times I feel very overwhelmed, sad and panicked. I have a lot of fears about what’s ahead, and at times, they seem to take over. There have been a few days where I literally felt sick to my stomach and had headaches that I think could very likely be attributed to anxiety.

It is possible that a two-hour MRI is in my future. When the nurse told me this, I could feel my blood pressure instantly shoot up! I never had anxiety about small places until a few years ago when I had an MRI. Ever since then even being in an elevator makes me anxious.

Now, however, it isn’t just about the closed in space. It’s also about having two hours where I can’t move or do anything for my mind to think about things and places best left alone right now.

Keeping as busy as I can is my therapy.

I get frustrated with how complicated arranging my medical world can be and the stupidity of some of the process, but otherwise, I am trying not to leave time for my mind to wander.



My strategy is to try not to think too much about things that are several months away and about which I can do nothing today. Instead, I am trying to focus on tasks I can complete this week and stay as mentally busy as I can.

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