Skip to main content

It’s been a long month

Regular readers will have noticed – I haven’t exactly been blogging a lot lately. I’m sure you won’t be surprised when I say a lot has been going on here.

I had such a perfect report from my trip to NIH, and yet every since I’ve been back it seems like it’s been one thing after another. Dizzy spells, bleeding sores around my stoma etc. We are so short staffed at work and each problem is more time away from the job, as well as from all the things that are important to me.

My apartment is filthy. I finally made it to the grocery store and got some healthy food, but I’ve been living on vending machines and takeout for weeks now. Obviously, that can’t be doing good things for my health, but I’ve either been sick, or in such a frantic state trying to catch up that two hours to walk to the grocery, shop, and walk home have seemed like a luxury I couldn’t afford.

Work is stressful anyway, but when you feel like you’re down in a pit, and every time you try to climb out the earth just gives way, it’s even more stressful. It’s stressful to feel as though you’re not doing a good job, but to be so frantic to get it all done that you can hardly concentrate. It’s like trying to take a sip of water from a fire hose with a tea cup. In the past, I’d have been able to work a few nights, or weekends, and pull it all out. These days, I just get too tired to do that for several weeks. I don’t know if that’s an old age thing, or an HPS thing. I do know that all these little annoying health issues aren't helping. I do know that my days of all-nighters or working 14 plus hours a day for more than a few days are over. I can’t do it.

And, frankly, that’s just the tip of the iceberg. There’s much more to the story, both at work and at home.

A long time ago I vowed to be open and share everything about my HPS experience here, with the exception of a few things that are personal to family members. I intend to keep that vow, but right now I can’t share the whole story of what’s been going on, and why I’ve been so absent. You’ve got a whiff, but in fairness to me it’s a story I want to tell in context, and so will save it until I can give the context.

I will say, however, that whether it’s thanks to the stress, perhaps aggravated by starting birth control pills to control bleeding, or thanks to something we haven’t completely figured out yet – my blood pressure became a big problem this week.

It’s been doing a worrying upward creep for a while now, and I had already scheduled an appointment with my doctor this week to talk about blood pressure medication. Those dizzy spells I’d been having started to return, and last week when I was home with ostomy issues I started to notice that my blood pressure was even higher than usual. This past weekend and week, however, it went from high to very high – at least very high for me. The dizzy spells went from these little spells to Wednesday feeling as though I couldn’t get enough air all day. My chest was pounding. It felt as though my whole body was about to spontaneously combust. It would rev up, then fall down, then go back up again.

My doctor gave me some medication for this problem (which I’ll explain in more detail later) but by that evening it seemed to be getting worse. Even as I was climbing into bed my blood pressure was sky high.

I called my doctor back, and I e-mailed Kevin and Dr. Markello. My doctor wasn’t around, but my old doctor, the one I loved so much but could never get an appointment with, happened to be in and helped me out. I ended up staying home another two days to try to get this blood pressure under control. I’m pleased to report, it is much improved this evening. I’m a bit panicked about what I’ll be walking into Monday morning since I haven’t checked my e-mail. I was afraid it would send my blood pressure back up if I was worried about work. Who am I kidding. Love it, hate it – I’m always worried about work.

Although the blood pressure is improved, I feel like a wet noodle! I’ve never had blood pressure issues like this before, but I can’t imagine living very long like that all the time. Even though my heart isn’t pounding and my chest isn’t tight, it almost feels sore or bruised. My muscles have been so tense for so many days that as they start to relax, they feel sore. I’m sure it’s partly the medication, but I get up to try to do something simple like put a load of laundry in the washer, and I feel wiped out again.

So, that’s what’s been going on with me. I do hope to catch up on some blogging. Throughout all of this, I’ve had so many things on my mind (besides the chaos that’s been going on) and I’ve greatly missed blogging. It’s therapeutic for me.

Comments

Anonymous said…
Hang in there Heather. You are going through more than any of us can imagine, but know that we are there if you need us. Just let us know what we can do and it's done. Well, winning the lottery can be a bit problematic, but you know what I mean.

Julie
Anonymous said…
Hey Heather,

So sorry to hear that things are rough for you right now. What a bummer!!! We also don't have any clue what your going through, but know that we hold you in our thoughts and prayers. Keep up the positive attitude. We are concerned and we are here for you also if you need us. Give us a call anytime!!

Love,
Candice & Crystal

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