Skip to main content

Code Brown

I am dead tired. It’s been a long week.

Yesterday I was worried that I wasn’t going to get everything finished that needed to be finished by the time I had to leave for NIH. My computer has been acting up again, and while I love my laptop, I’ve discovered it’s not ideal for marathon computer sessions (something that has me rethinking my new computer purchase strategy.)

So, I stayed at work to try to finish up some things until 10:00 pm Thursday night. Today I felt like I was in the last leg of an endurance race. I’m so tired, and yet there is so much to do. I had to be sure I made some decisions about what we’re going to cover in the October issue so that our editorial assistant would have something to work on while I’m away. At the same time, since we’re down on staff, we’re trying to get some of the stories finished early to allow for extra glitches in layout and production. We’re using freelancers to help edit, and they work for other people besides just us – a fact I’m especially sensitive to since I’ve been a freelancer for years. That means I have to finish my feature before I leave Monday.

I did start it – sort of. Keeping up with training the new assistant, finding news stories when it’s been a slow news week, taking all the PR phone calls, and going to the bathroom nine times a day – some days I feel like I do nothing but spin my wheels.

I started off the morning by meeting with our publisher. I typed up a list of everything our assistant was supposed to be working on next week. I went through my list of projects for the next two issues and the status of each one. We went over how things are supposed to be handled next week, who is supposed to do what, who needs to be checked up on etc.

These are the sort of things I normally work with our editor-in-chief on, and she knows the NIH drill. I always tell her that we should plan as though I will have no e-mail or phone access. My last two NIH trips didn’t really go as planned. When I went around Christmas time, I’d been sick for a few weeks beforehand with strep, a sinus infection, and showed up at NIH with a nasty cough. This meant extra tests – and frankly, what I really needed was some rest. I was completely worn out.

On the spring trip I was having hives and sudden, horrible lower back pain. Again, a totally unexpected development that called for a bunch of extra tests as well as medication that made me pretty loopy. It wasn’t exactly on the schedule. If I’d planned to work from NIH, I wouldn’t have been able to do it.

The other glitch is technology.

The inpatient beds at NIH each have a TV that has internet access. The trouble is there’s no adaptive technology on the machine and it can be very hard to read e-mail etc. for any length of time because of eye fatigue. I’ve also have trouble on every trip being able to connect to the server at work. I think it may be a firewall issue – but patient internet access isn’t exactly top on the list for the IT department. It’s understandable. I’d rather all the other computers in the hospital be working properly!

Lastly, lets face it. NIH trips always have an element of nerves associated with them. When I’m stressed out about waiting for test results, or if I should get bad news, I don’t want to have to be on the phone with work while someone blows a casket over some photo or something.

So, I tried to explain all of this to our publisher. She seemed to understand and be very respectful of all the issues.
After our meeting I went to do a news brief for the day, and couldn’t find a decent story to save my life. It’s seldom so slow! What should have taken an hour suddenly was taking hours, and I had other things to do. I could almost feel my blood pressure rising like steam building in a teapot. The clock was ticking.

Then about 2:30 pm I felt that dreaded itch.

Sure enough, I was leaking.

Worse, although my bowels have been much better this week, I was having the runs – ostomy output the consistency of water. I wanted to just burst into tears. How could I leave with some vague health explanation when we were so under the gun? I finally had to confess my ostomy to my boss this year, but I don’t know if she told her boss about it? Even worse, it was too late for a cab – by the time one would arrive there would be pooh everywhere.

There are no private restrooms at work. It makes changing an ostomy at work very difficult. At one stage I was contemplating asking my company to fully enclose the handicapped stall in the restroom so that I wouldn’t have to go home every time I had an ostomy crisis. But, I never did it because of other changes afoot at work.

So, what was I to do now?

As the saying goes, necessity is the mother of invention. I did have an extra pouch and supplies in my desk drawer.

Changing my ostomy without getting blood or pooh on my clothes pretty much means getting almost naked. How can you get naked in a public restroom and have access to the sink for water to clean the skin?

Luckily I still had my ice tea cup from the morning. I stuffed my supplies into my purse and went to the kitchen and quickly cleaned out the cup. I filled it with water and headed for the bathroom.

I looked under all the stalls and the bathroom was empty. But, there was no way to lock the main door. I grabbed a huge wad of paper towels and headed for the handicapped stall.

You know how in bathrooms there’s a pretty wide crack between the stall door and the petition its self? I have no idea how much a sighted person can actually see through this crack. I was afraid to get undressed from the bottom down for fear someone would be able to see just enough through the door. Can you imagine the office rumors that would result?

I had taken my large tote bag with me and I hung it on the door hook and tried to position it over the crack. I then took the paper towels and draped them over the handicapped rails of the stall. I hung the grocery bag that I kept the extra supplies in over the back of the toilet so that I could put my trash in it. Then I carefully balanced the cup of water on the toilet seat, which was a major feat of physics because the toilet seat isn’t flat – it slopes down.

I took some of the paper towels, pulled my pants down only part way, and stuffed the towels in my pants in sort of a draping fashion to try to protect my pants from any blood or projectile pooh.

Then I started trying to change the appliance.

Wouldn’t you know that pesky sore on the underneath of my stoma is back and it’s bleeding and by the way, it’s sore! I’m carefully trying to grab paper towels to hold on it, as well as to put over the stoma so that the diarrhea I’m having doesn’t go everywhere. And, I’m trying to carefully dip some of the towels in the water and clean the skin around my stoma. All the while I’m trying to be careful so as not to spill the water or drop the towels off of the rails, and thus have to bend over and pick them up!

I couldn’t seem to get everything to calm down enough to replace the appliance. There’s no air conditioning in the restroom, so I’m getting hot and the sweat is starting to run down me – a development that isn’t going to help make the pouch stick. I am so ready to cry at this point.

And then in walks the janitor!

I could hear her changing out the paper towels and the soap dispensers and I wondered if she could see anything through the cracks, or if she had any idea there was something strange afoot in the handicapped stall.

Oh well – nothing could be done about it now if she was at all aware – so I kept working on my little project. Eventually I got a new pouch on, cleaned up and went back to my desk.

I spent the whole afternoon waiting for another leak. I was afraid the sore would keep bleeding. I knew the skin area wasn’t really adequately cleaned.

My stress level, as I started back into my work, was now through the roof. I’m tired. I’m cranky. Now I’m sore. And I’m behind.

I now have an hour before I have to catch the bus home, and my phone rings. It’s my publisher.

She’s having second thoughts about the topic I had assigned for one of our departments. The assignment had gone out to the writer two weeks ago. Not only had I discussed the topic with my boss before she left, but the writer has already started doing interviews. And, I have an hour left? What am I supposed to do – rewrite the assignment letter? You’ve got to be kidding me.

She actually didn’t want me to redo the letter. She just wanted to think through the Nov/Dec assignment a bit differently. Thus in this very thoughtful way (which makes total sense) she wanted to discuss the issue, look over the options etc.

I’m worried I sounded very abrupt. She, of course, had no idea what had been transpiring the bathroom on top of everything else I had going before I could leave. How exactly do you explain this to some unsuspecting soul?

And then I just started laughing. What else are you going to do?

I have a feeling that at some point next week I’m going to be asked how being in the drug trial affects my life. Hmmmm…..how about sweating like a pig in a public restroom, half naked as your bleeding and pooping everywhere all in an effort to not have to leave work early so you can get everything finished and be in the hospital for a week?


Comments

Unknown said…
We'll be praying for you as you travel to NIH this week. We wanted to call you today, but after reading your post decided not to bother you until you have some free time. I am sorry to hear you had a rough few days. My goodness!! I honestly don't see how you handle it so well. I would be a complete mess. Bless your heart. Please know that we are thinking of you and are hoping you'll bave a great NIH visit and better days a head.

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.

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