Skip to main content

The world turns red

The last few days had the sort of excitement I could really do without, thank you very much. I’ve missed another two days of work and given that we’re so short staffed, this is not good.

Wednesday evening I ventured down the street to the drug store about a mile away. I felt so tired. The drug store has been under renovation for nearly a year. I think someone is making a career out of the project. That means that every time you go to get something, it’s been put in a different place.

And this time the mission was of a female nature. I went to the pharmacy and tried to get the attention of the female pharmacist, but she was busy so the guy had to help me. He had an African sort of accent and couldn’t seem to understand what I was after. How do you explain what a maxi pad is to a guy who doesn’t seem to speak English?

He took me over to the bladder control section. This was not working, and I was feeling increasingly tired and getting cranky.

So, a female manager stepped in to help, but rather than walk over to where we were standing and lend a hand, she had to shout directions to him from across the store. So much for a little privacy.

I walked home with my package and when I arrived, I discovered that I no longer had my keys. Sitting on the floor outside my door, I turned the contents of my purse upside down trying to find my keys. How could I have lost them???? I felt so tired that the thought of walking another mile to the pharmacy and back again was just more than I could do. And, of course, my mobile phone was happily charging inside my apartment.

One of my neighbors came home and called the landlord for me. The commotion in the hallway caught the attention of the other neighbors, and we all ended up in the living room of the woman that lives across the hall from me. I felt so bad because I knew she wasn’t really expecting company.

As we sat there talking about the neighborhood, the laundry room etc. suddenly I began to sweat as though I had just done a hard workout. Everything began to turn red and the voices of the ladies seemed as though they were far away. I felt as though I were going to pass out. I felt short of breath, although I think that was probably from the anxiety of feeling as though I was about to end up in a heap on the floor for no good reason. All I could think was, I’m going to pass out right here on this poor lady’s floor and scare the crap out of her!

Funny how when you really don’t feel well your common sense seems to desert you. All I could think about was not getting sick or passing out in front of these ladies.

I asked for some water and sucked down about three glasses. The landlord arrived, let me into my apartment, and I felt better. I decided I was probably just dehydrated from the walk, and I hadn’t been able to get inside to get something to drink.

I went to bed, woke up the next morning and went to work. I had two more similar episodes at work by 11:00 am.

The whole thing just seemed so silly. I was just at the NIH last week having the most complete physical known to man. I was quite sure there was nothing serious wrong with me.

The only real change there had been was a minor little staph infection on my skin. Dr. Merideth had given me some Cephalexin for it. No big deal. It seemed to be clearing up nicely.

But you can’t be on the verge of passing out on newsletter deadline day and not have a good excuse. And I knew if I called back to the NIH, they’d probably tell me to get myself to my local doc. So, that’s what I did.

Of course by the time I got there I was feeling much better. My blood pressure was high, but otherwise everything was fine. And it wasn’t so high that you’d think I’d be passing out.

They concluded I was probably either dehydrated, or having some sort of reaction to the antibiotic and sent me on my merry way with instructions to come back if the problem kept up.

They gave me a note for Thursday expecting I could go back to work on Friday. The trouble was Friday was the height of that time of the month for me, no small thing for many of us HPS’ers. If I already wasn’t feeling well, now I was feeling bad cramps and very tired.

I was afraid to go to work for fear that if I got sick again, I’d end up with another $25 cab fare home – not to mention being sick in the restroom at work is just horrible.

So I stayed home and called Dr. Merideth. She was so nice and helpful. We decided to stop the antibiotic and see what happens. I’d already been on it for six days.

I tried to work from home Friday, but by afternoon I’d concluded it was a lost cause. I was so crampy, and so tired, that I couldn’t focus on what I needed to do. I just went to bed and slept for a blissful six hours!

Today I feel run down and tired – but I think that might be the usual HPS cycle thing.

We’re going to try Lo Ovral and see if we can’t do something about these HPS female problems. I’ve tried pills in the past, but had a bad reaction to them. These are different, and so I’m hoping they’ll maybe work better. If not, I’ll be back at NIH in December and we can re-evaluate then what to do.

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...

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...

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.