The saga continues

Well. Almost 3 weeks ago, the balloon holding my gastrojejunal tube in my stomach burst and the whole tube slithered out onto the floor. I know that sounds painful but I felt nothing. I was walking down the hall at work, and was right outside my boss’s door when it fell at my feet. I kinda freaked out and yelled “call me an ambulance!” A client came running and reached to pick up the tube, but I had to stop them and get them to disinfect the floor with Clorox. I picked the tube up and wouldn’t let go, even after the ambulance came. I’ve had such bad luck with tubes that I wanted to make sure I had a sample of the one that I liked. I was at work in the Bronx, so the ambulance wouldn’t take me to Mt Sinai (where the tube was installed), so I had to settle for St. Barnabas. They couldn’t do anything about replacing the tube, since they didn’t carry that brand or model, but they at least put in a Foley catheter to keep the stoma open. ( A stoma is the hole that the tube enters my body through.) I then took a cab to Mt Sinai. Seeing as it was Friday night and no one was on duty in Interventional Radiology, I sat in the ER all night for nothing. My GI came to see me at 8:30am Saturday morning, and said he couldn’t do anything until Wednesday at the earliest. I went home. Monday 2 weeks ago, I got up and the Foley, which was clamped shut with a hemostat had developed a hole, because it’s not ment to be clamped with a hemostat. Not only that, but I had sprung a leak. I was literally spewing stomach fluid across the room. Before I could even leave the apartment, I had to change t-shirt and polo shirt because they were soaked. I put on shirts number 3 and 4 and went to therapy. I was soaked by the time therapy was over, but went to work anyway. I had had the foresight to bring shirts number 5 and 6 with me, so I changed and threw the other shirts away. I went back to Mt Sinai, where I sat in the ER all day. Meanwhile, the nurses didn’t, or wouldn’t (Same dif), change my bandages fast enough, so I was in horrible pain. Turns out I was burning myself with my own stomach acid. It burned me in the exact shape of the bandages. I saw my GI again at 8:30PM, and he informed me that he had arranged to have a new tube put in endscopically on Thursday. He put in a temporary tube. I went home. On Tuesday, I discovered how badly I was burned when I stepped under the hot water of the shower and screamed. On Thursday, I went for the endoscopy and when I awoke, I discovered that he had left the temp G-tube in and run the J-tube through it to my jejunum (which is right after the duodenum and before the small intestine). The new gastric and jejunal ports are modular, and Friday, the jejunal port fell off. Onto the floor. I was thrilled. I went back to the GI and he told me to just krazy glue it. I did that. It fell off again today, so now, once again, I can’t do my enteral feeding at night. My nutritionist at Beth-Israel was so distraught (he’s, like, really, really cute. If he were gay and not my doctor, I’d be all ovah him like white on rice), he referred me to a new specialist at St Luke’s/Presbyterian, whom I saw today, but who can’t do anything until he sees all of my biopsies from Beth-Israel. Meanwhile, I’ve started throwing up again. My life certainly isn’t dull. Who ever thought I’d reach the point where my AIDS was a secondary illness to something else?

Insomnia update

Sooo, Monday night I took that combo of sleep inducers. I slept alright… not on Monday night, but all day Tuesday. I had to leave work at 10:30am and go home. I slept so soundly that my boss Tuesday got worried when I didn’t answer my cell phone the 4 times she called me. She said she nearly called the cops to check on me. SO I called my psychiatrist who said that I should stop taking the Seroquel altogether. So last night, I took my Ambien and Zoloft and never slept at all. Ever. Worse still is that my stomach was in bad shape. I threw up at midnite (I really enjoyed that Wendy’s Angus burger, too. What a shame.) and again at 6am. I’m exhausted.

Insomnia

It’s 2am and I should not only be asleep but knocked out by a new combo of Ambien (20mgs), Zoloft (100mgs) and Seroquel (100mgs). But here I sit. Friday night, I took 100 mgs and let me tell you, I was comatose from 10pm on Friday until 2pm on Saturday, and still spent the day in daze. Saturday, I took 50 mgs, and slept 10 hours, but was still groggy all day Sunday. I took 25 mgs on Sunday night and could barely get up for work. I had to leave my therapy session early because I was so out of it. So tonight I took 25 mgs (along with the zoloft and ambien) at 11pm and here I sit wide awake.

By the way, this is me

I finally taught myself how to work the camera. This is me riding NYC Transit. Me so pretty!