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• Health Update – am I losing my mind?

  This is just a little health update for my personal records – as well as for the entire world I guess – you know, part of the documentation. While I was at NIH Kevin upped my Advair, but told me to come down on the dose after about a month or so. This... Posted Jul 26 2010, 08:25 PM by Living on the frontlines Filed under: Personal Health

• Follow up at the NIH – one year post Pirfenidone trial

  Last week I was back at the National Institutes of Health for my one-year follow up from the Pirfenidone trial, as well as to undergo a lung lavage to donate lung fluid for research. I don’t quite know how to explain this. Sometimes when I’m traveling... Posted Jun 27 2010, 07:54 PM by Living on the frontlines Filed under: Personal Health, coping

• I have the bla blas

  Have you ever felt just, well, bla? Not horribly sick, but not horribly well. Not really depressed, but not perky and peppy either – just kind of, well, bla? That’s how I feel. It’s allergy season, and as I do every year, I’ve been battling these allergies... Posted Jun 03 2010, 08:03 PM by Living on the frontlines Filed under: Personal Health, Personal life

• HPS takes New Orleans

  It’s been quite a few weeks! I know I haven’t blogged much lately, but boy do I have catching up to do. I started out the most recent round of traveling by heading to New Orleans for the American Thoracic Society or ATS. This time I was able to meet Karen... Posted May 27 2010, 05:19 PM by Living on the frontlines Filed under: HPS Network News, Personal Health

• Plans to return to NIH

  I've been talking to Kevin about returning to the NIH for my one-year post protocol follow-up visit. It looks like I'll be going the end of June. Some of the rules at NIH have changed, or tightened, depending on how you look at it. I used to be... Posted Apr 21 2010, 03:47 PM by Living on the frontlines Filed under: Personal Health

• One of those days

  Today wasn't exactly the most productive day on record. I felt so tired today, and I'm not sure why. By three in the afternoon I gave up and took a long nap. This evening I have another headache, although not as severe as the one a few days ago... Posted Feb 12 2010, 02:01 AM by Living on the frontlines Filed under: Personal Health

• Frustration and guilt – Health update

  Notice: Not for the squeamish The past three days have been very frustrating. I’ve been so fatigued and having a lot of diarrhea. Today I have these sores in my mouth on my tongue and on the inside of my right cheek going down to the gum. This evening... Posted Jan 31 2010, 11:53 PM by Living on the frontlines Filed under: Personal Health, Personal life

• Hack hack

  You know you’ve got a cough when your neighbor, who lives across the hall, knocks on your door because she can hear you coughing and is worried about horrible you sound. Do I know how to make a first impression on a new pulmonogist or what? Tomorrow I... Posted Jan 05 2010, 09:22 PM by Living on the frontlines Filed under: Personal Health

• The drug trial – the final chapter

  It’s been a few weeks since this happened. I wasn’t as worried as I usually am about recording it “in the moment” because the film crew came to visit and filmed the entire thing. Our trial of Pirfenidone came to an end and so after three years, I had... Posted Nov 09 2009, 04:49 PM by Living on the frontlines Filed under: Personal Health, coping, Personal life

• It’s been a year

  Oct. 15th was a big anniversary – it’s now been a year since I left work. A year ago I was such a mess that looking back it’s hard to imagine that the person I am today, and the person I was then, are one and the same. A year ago it was hard to blog about... Posted Nov 02 2009, 09:27 PM by Living on the frontlines Filed under: Personal Health, coping, Personal life

• Be careful what you ask for

  I was wanting a way to dampen the munchies - and God took care of it. Grin! I don't know what's up, but this morning I woke up with sores all inside my mouth that hurt like *(^(^(^., Tylenol didn't do it. I had to break out the big guns. I... Posted Jul 27 2009, 04:20 PM by Living on the frontlines Filed under: Personal Health

• Help - I need a cure for the munchies

  I don't know what's wrong with me. I have a very bad case of the munchies and have had for about two days now. This is bad, bad - very bad. I don't know why. I don't feel stressed, or depressed or any of the normal emotional things that... Posted Jul 26 2009, 11:18 PM by Living on the frontlines Filed under: Personal Health, coping

• Ostomy woes

  And another health update......the ulcer under my stoma that was the size of a quarter before I traveled is now a long shape about the size of my pinkie finger. It now doesn't just ooze blood - it bleeds actively making life a real challenge right... Posted Jul 24 2009, 02:35 PM by Living on the frontlines Filed under: Personal Health

• Home sweet home

  I do love traveling, but I also love coming home. I'm now home from Boston with lots of pics - I'll be driving everyone nuts with photography for a good long while now. Evil Grin! My trip home was like something out of the movie, Planes Trains... Posted Jul 21 2009, 02:32 AM by Living on the frontlines Filed under: Personal Health, Personal life

• Health Update: it's the little things that annoy me

  Here's just another little health update for my records. This week my acid reflux has been acting up. I"m not sure why. Okay, the night I ate Indian food might be easily explained, but otherwise because of the reflux I've been sticking to... Posted Jul 02 2009, 11:08 PM by Living on the frontlines Filed under: Personal Health