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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...
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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...
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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...
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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...
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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...
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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...
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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...
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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...
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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...
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This afternoon, while laying in bed with a particularly nasty headache, I was listening to a show on NPR called “Fresh Air Weekend.” (I listen to Fresh Air during the week too.) The last interview of the program was with two women, both of whom had been...
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Had the drug trial not been shut down, right now I would have been at the NIH for my three-year follow up. It feels so strange to not be at the NIH. I hesitate to say this too loudly for fear someone think I’m a little crazy, but I think I’m not alone...
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I keep having these days where I feel so great, and then the next day or two I’m completely exhausted. It’s like I’m a little energizer bunny and I get wound up, I go and go, until I run out of batteries and splat – I’m down for a day. Today I spent a...
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As difficult as the news is about our drug trial, there are many things to feel good and grateful about. I don’t mean to minimize anyone’s grief – I’ve had the luxury of some time to process this. We all handle grief differently. I, personally, need a...
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Now that the news has been shared with everyone on the protocol, I can finally comment on this, and we can finally, collectively, begin to process the news and create a plan to move forward. When I first got the word, I must confess it felt as though...
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I thought some of you would find the following story interesting. It's from the Arizona Republic. Kilimanjaro hikers show that visually impaired are independent by Eddi Trevizo - Jul. 27, 2009 09:05 AM The Arizona Republic Cindy Wilhelmi and Adam...
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