Skip to main content

Hack, Hack, Hack

Hack, hack, wheeze, hack, bark bark ….groan. This has been me for the last week. I’ve contracted yet another sinus infection, the third one since the first of the year not counting the three weeks of extreme fatigue that felt like mono, and the stomach flu I had in January. Things that make you go hmmm…..and yes, I do take vitamins. (Everyone asks me this all the time.) My sides ache from the coughing. I feel bruised and sore, as though I’d been hit a few times in the ribs. My voice comes and goes and my throat is scratchy.

This time I didn’t go to the doctor, but if this cough keeps up I’ll have to cave in and do it. If I went to the doctor every time I’m supposed to go to the doctor, according to Kevin at NIH, I’d just quit paying rent on my apartment and take up residence in the waiting room! I feel like I always have something – never serious – just annoying and tiring.

The cough is better today for the first day though. I actually walked three blocks without panting and hacking up a lung. And, I was able to get some sleep last night too. People wonder why I avoid them when they’re coughing! When I say I catch everything, I’m not kidding!

I’ve been avoiding all interaction with people that isn’t necessary in hopes that maybe I’ll get over the bug I have before I catch another one. I haven’t been to church. I haven’t been to camp fire. I gave up babysitting my godchildren this weekend – something I was really looking forward to doing.

I have, however, been to work. I feel like I can’t afford to miss more days. Last weekend mom called and it was obvious I wasn’t feeling well. She asked how the sleep study went etc. I told her how the week had been, and she was dismayed that I’d missed several days of work. “You know Heather,” she said, “I have to go to work sick sometimes. You just have to suck it up.”

I bit my tongue. “You know,” she went on, “That doesn’t look good at work. You could lose your job.”

I bit harder. Man, if she only knew the whole picture. This is why I don’t call home unless things are going very well. Just little things like this sometimes about send me into orbit. As if I don’t think about this every time I don’t feel well. As if I’m not already stressed out about all the work that I’m behind on – thus even when I am home sick I’m still on the computer trying to keep up.

If she were tuned in to the realities of things, she would know I go to work many, many days when I really don’t feel well. I stay home when I think that by doing so I’ll actually get better, when I’m running a high temperature, or when I really just can’t be there because my ostomy is acting up, or my female cycle is so bad that I’m bleeding too much (which isn’t often, thank God.) This past week being a prime case in point. I was already doing everything the doctor would tell me to do, and I didn’t think getting some extra sleep would really help. So, I went to work. I did my interviews even though I spent half of them hacking in some stranger’s ear. I wrote my stories even though my head felt like it was being squeezed.

My entire life revolves around my health insurance. Yes, I know all about sucking it up and pushing on even when you don’t feel well. I do it all the time.

I thought about reminding her about the time I took midterm exams with hemoglobin of six (and aced all of them.) But, what’s the point.

You know how we slackers can be.

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.

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’m h