Skip to main content

Health Update: Plugging along

I haven’t posted an update in a bit. It’s been super busy and honestly, I just have days where I can barely keep my head above water and do what absolutely must get done that day.

All and all I am doing well.

I started a new medication and am hopeful it will help with some of this. It does take a bit for your body to adjust to it though. Some people have no issues, while others get side-effect symptoms. I’ve had some of those issues, but really can’t say for sure if they are related to the medication. For example, I’ve had stomach upset and some nausea, but then again with my gastrointestinal issues, I go through times when I have that already. It’s hard to say if it is related or just bad timing. Either way, it doesn’t matter. It isn’t so bad that I can’t cope with it. The biggest issue isn’t even so much the stomach upset as it is the getting up every 40 minutes or so all night to go to the bathroom. A few nights of that really wears a person out! Grin! Today I’m having some mild tummy issues, but the bigger problem is I’m just tired. It makes it hard to focus and concentrate well. I find the fatigue also makes me forgetful.

Thankfully, I go through a few days of this with each increase in the medication, and then things seem to level out. That makes me think it might be related to the medication. If so, I just have one more increase to go and then hopefully, we’ll be over this little speed bump and on to the next one.

Thanks again to all of you who are offering support and who have helped with my fundraising for the move and the transplant. I started holding off on some of my thank you notes because I wanted to be able to give an update about the plan when I was thanking people. Now, I can get back to that. Grin!

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.

Help for one of our newest HPS friends

As many of you know, I have a google alert set up for all sorts of key terms like albinism, pulmonary fibrosis etc. The following was posted on the blog of a friend of Melanie's. Melanie is one of our newest members of the Hermansky-Pudlak Syndrome family. Unfortunately, like so many she didn't know she had HPS and the lung disease sort of snuck up on her. Melanie will be 26 years old next week. Perhaps some of us would like to contribute to the fund set up to help her and her family for her birthday. Here's the post: Melanie Hernandez, beloved sister and daughter to Pete, Monique, Cookie, and Bugie, has been diagnosed with Pulmonary Fibrosis, a lung disease occurring in people with Hermansky-Pudlak Syndrome, a very rare disease.Hermansky-Pudlak Syndrome (“HPS”) is a genetic metabolic disorder. It is characterized by: Albinism, Vision Impairment, Bleeding Disorder, Inflammatory Bowel Disease and Lung Disease – Pulmonary Fibrosis. With the family’s research and the recollect