Skip to main content

Frustration and guilt – Health update

Notice: Not for the squeamish

The past three days have been very frustrating. I’ve been so fatigued and having a lot of diarrhea. Today I have these sores in my mouth on my tongue and on the inside of my right cheek going down to the gum. This evening the runs are back too.

I think I find fatigue the most frustrating symptom to deal with and the one that causes me the most emotional distress. Physical maladies and pain are no picnic, don’t get me wrong – but at least for me, they don’t evoke the same emotional fallout that just plain being so tired does.

Friday I did get a lot done, even though I felt tired all day. Saturday I accomplished nothing. No housework. No HPS work. Nothing. I was in the bathroom every 30 minutes to an hour. By evening the Lomodel had taken effect and the runs were slowed down, but I felt wiped out by the day. I also felt dehydrated.

Dehydration is a funny thing. At first you might feel thirsty, but once you get past that, at least for me, I don’t desire anything. I don’t feel like drinking, or eating. I just feel like sleeping. I have to fill up a big glass of water or juice and force myself to drink it because intellectually I know I need it.

I have a theory that if you get dehydrated before you realize it (because you’re sleeping a lot), that it somehow affects your brain and it’s harder to snap out of it. You’re not aware that you need to make yourself get some liquids in you.

Today I got up at eight. I haven’t been to church in a while (seems like I’m never home or if I am, I’m not feeling well.) I felt like today was the day I was going to get my schedule back on track! I felt good. I felt awake. I took a shower, washed my hair, put my church clothes on and as I was brushing my teeth I looked down to realize I had dripped blood all down my front. My nose was bleeding.

Great! Just Great!

The nosebleed wasn’t severe and I had it stopped in 10 minutes – but it made me late enough for church there was no point in going.

By noon I was having a code brown – guess it’s a good thing I didn’t go to church or I would have been there. I’m at a much higher risk for code browns when I’m having a lot of diarrhea as the liquid seems to seep under the seal easier.

I changed my appliance and then lay down on my bed to apply the necessary 10 minutes of pressure to the stoma site. That was about 12:30 pm. Sometime around 8:00 pm I woke up.

Total frustration!

The entire day got away and I have SO MUCH to do.

It’s hard not to feel a lot of guilt about fatigue because you feel like such a lazy person. Even if you know there’s a good reason why you feel so tired – when you are so tired it’s as if someone else suddenly takes over your body. When they give it back to you – when you get enough rest and you wake up feeling great, and you realize how much time has gone by, it’s just downright frustrating.

This leaves me with the dilemma tonight. Do I go to bed at a normal time? If I do, will I sleep?

I almost feel like I need to pull an all nighter in hopes of getting my schedule back into a normal pattern. I also want to pull an all nighter because I need to feel a sense of accomplishment. I haven’t accomplished anything for several days and that list of things to do is in my brain eating at me. I need to get something done.

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