Skip to main content

Health update

I think I jinxed it. After posting that my GI issues were better, apparently my bowels decided they were being ignored and wanted more attention. I've had cramps and the runs and joint pain every since I last posted. I've also been hugely tired. I spent most of yesterday in bed, and about half of today. It wasn't intentional. Every time I sat down I'd fall asleep. Finally, I just gave up and got comfy. And the skin that had been its best in years - well, there's a new ulcer about the size of a quarter. It only bleeds a tad, but I had four code browns yesterday. Drats!

This is when I get blue. Everyone's been worried about me being blue because of having to go on disability. I only get blue when I've got things I want to be getting done, and my body vetos the idea. That makes me frustrated. I feel as though I should be able to just toughen up and get the job done, but when you can't stay awake that's hard. Maybe I should start taking the stuff Dr. Markello gave me to stay awake - I guess it just didn't seem like I should take it if I'm not working - but this is so irritating. And now my sleep patterns are all wonky again. Whine - someone pass the cheese!
Labels:

Comments

Kathryn said…
I'm so sorry you are having such horrible health issues. I've had all of your symptoms before. They are usually related to an overgrowth of bacteria, GI flare up, and/or inflammation. At any rate, it can be quite frustrating when our body "disappoints" us. I'm praying that you will have some doctors that are won't stop until they have helped you. And some Christian doctors that look to the Great Physician for wisdom and treatment answers.
7:13 PM
Post a Comment

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...
1 comment
Read more

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.
Post a Comment
Read more

The blog is back, I hope

  What started as a way to share news about HPS and what it is like to live with Hermansky-Pudlak Syndrome has fallen apart badly! There are a lot of reasons for this. Some are related to health. Some are related to time. And some are related to mental health. Finally, the last obstacle was technical. I lost access to my blog. Every time I started to work on regaining access, something interrupted the process and I’d have to start all over again. Before you say it, I know. A blog is so old school. Haven’t you heard of a vlog Heather? Or maybe TikTok? I know my limits. I have a great face for radio. I’m not particularly eager to film myself. When I do, I feel I need to spend extra time putting on makeup or fixing my hair. Yet, often when I have the time to do something like this, it is early in the morning or late at night. I don’t want to “get ready.” I’m having a hard enough time squeezing this in without staging myself. Grin. I’m trying to start with small goals. Right now, I...
Post a Comment
Read more