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• Simmering beneath the surface

  As a person with Hermansky-Pudlak Syndrome, I think there are things that go through almost everyone’s mind at one time or another, no matter what your personal coping style might be. Whether you cope by being very involved in HPSland, or by keeping HPS... Posted Jul 08 2010, 12:41 AM by Living on the frontlines Filed under: coping

• 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

• A great first-person account of pulmonary fibrosis

  Below is a link to an article that appeared in the Los Angeles Times. This is the same guy who was on the TODAY show. Articles like this help to generate greater awareness of pulmonary fibrosis. Pass them along. http://www.latimes.com/news/health/la-he... Posted Jun 27 2010, 01:44 AM by Living on the frontlines Filed under: coping

• A lot on my mind

  I’ve needed to blog lately, but unusually, I’ve been putting it off the same way I put off dusting or ironing – there’s always something that seems more important and provides the perfect excuse to put it off. That’s unusual because I actually enjoy blogging... Posted Jun 19 2010, 07:45 PM by Living on the frontlines Filed under: coping, Personal life

• Low vision moment - defeating the Spider

  My latest low vision moment..... Last night, naked as the day I was born, I went to get into the shower. There was this big black thing in the bottom of the shower near the drain. This time of year I have a lot of spiders in my apartment, and they give... Posted May 08 2010, 05:04 PM by Living on the frontlines Filed under: coping

• Being Irrational

  Yesterday just wasn’t a good day in the journey to find a cure for HPS. The FDA’s announcement about Pirfenidone shook us hard. Every step of the way when there has been bad news, there was at least something hopeful around the corner to balance it out... Posted May 05 2010, 11:56 PM by Living on the frontlines Filed under: coping

• Michael’s Therapy

  After yesterday’s little meltdown, today I spent the morning feeling exhausted. I got up at 7:00 am and was at my desk by 8:00 am. By 10:00 am I was back in bed. I was so tired. Since last Thursday I’ve had a headache, but not like my usual sinus headaches... Posted Dec 15 2009, 08:47 PM by Living on the frontlines Filed under: coping, Personal life

• Falling through the cracks

  It’s been a stressful week. I’m very behind on HPS stuff because I’ve been too busy trying to sort out my personal business. Yesterday I got a letter from the state of Kansas telling me that my SSDI income (the only steady income I currently have) is... Posted Dec 15 2009, 08:22 PM by Living on the frontlines Filed under: coping, Personal life

• The reason for the fundraising

  I know I've probably been rather irritating with all the fundraising pushes lately. It's fundraising season, what can I say. For a brief moment however, I want to share some prayer requests that remind me - and hopefully others - why we work so... Posted Dec 10 2009, 07:28 PM by Living on the frontlines Filed under: HPS Network News, coping, Personal life

• 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

• To know, or not to know

  A few days ago I got to the end of a bottle of study medication. I laughed because once again, there were only two pills in the bottom of the bottle. The bottles are counted out carefully, 180 capsules in each one – so by the time you taken all nine capsules... Posted Sep 18 2009, 04:03 PM by Living on the frontlines Filed under: coping

• Chronic illness and disability – not exactly the same thing

  Today was a day of small victories. It’s hard to believe it has taken so long to rebuild life since I had to leave work last October. I think I should finally have my new home office up and running just about a year to the day that I had to leave work... Posted Sep 14 2009, 11:48 PM by Living on the frontlines Filed under: coping

• Should – the most dangerous word in the English language

  Blogging about some of the ways that having a chronic illness has affected my life seems so uncomfortable. I think the problem is in day-to-day life I try not to focus on it. When you do, the word “should” tends to come up a lot, and that’s probably one... Posted Sep 13 2009, 10:59 PM by Living on the frontlines Filed under: coping

• Should – the most dangerous word in the English language

  Blogging about some of the ways that having a chronic illness has affected my life seems so uncomfortable. I think the problem is in day-to-day life I try not to focus on it. When you do, the word “should” tends to come up a lot, and that’s probably one... Posted Sep 13 2009, 10:59 PM by Living on the frontlines Filed under: coping