Living on the frontlines

There are a myriad of reasons I’m in a funk right now, but it’s not helping that it seems suddenly I can’t get a thing accomplished at work. It’s as though I’ve been cursed and suddenly no one is calling me back! I took on a freelance story this week about a retail development under construction. It should have pretty much been a slam dunk story. All they wanted was an update on the progress – things like which anchor stores have committed to the project and is the construction on schedule? We’re not talking major investigative reporting piece here – we’re talking about a short story destined for the inside pages. Frankly, this particular outfit doesn’t pay particularly well and I wouldn’t take on their stories if I thought they were pieces that required massive digging – at least not for their usual rates. I don’t have the time for those sorts of stories with my full time job, and based on what they pay, I’d be making less than minimum wage if the story required more than three or fou...

I’m not feeling well, which is probably contributing to my current funk. It seems like I just got over a “virus” not too long ago and now I’m feeling like I’ve got a cold of some type. My sinuses are acting up I guess. Last night I came home from work, ate a half a cup of clam chowder, took my meds and went to bed. My head was throbbing and everything seemed to make it hurt worse. I just pulled the quilt up around my ears and lay in the dark listening to the radio until I fell asleep. Even though I slept until about 9:00 am this morning, I still feel really tired. My nose is running and I’ve definitely got a cough going on. It comes in spirts and when I get to coughing I cough so hard I just about throw up. And, afterwards, I’m having a little trouble catching my breath. My throat hurts, probably from sinus drainage, as does my ear. Thank God Phyllis took me to the store when she was here so I’m well stocked. We’ve had an ice and snow storm and getting groceries in the snow is no picni...

This year when you’re watching the Tournament of Roses Parade on TV January 1, 2007, keep your eyes peeled for the Donate Life Rose Parade Float sponsored by a coalition of advocates from the tissue and organ donation community. (A rendering of the float is pictured above.) It’s the fourth year the organ donation community has participated in the parade to bring awareness to the value of blood, tissue and organ donation. This is a subject particularly dear to the Hermansky-Pudlak Syndrome community. Many, many of us (myself included) are here today because someone somewhere was willing to be a blood donor. We sometimes not only need blood transfusions, but platelet transfusions. It’s takes multiple blood donors to get enough for one bag of platelets. I had many transfusions with my ileosotomy surgery 13 years ago, both blood and platelet transfusions. I also required platelets when I had all four of my impacted wisdom teeth removed. I owe my life to probably more than a 100 people who ...

I’m in a funk. I’m not entirely sure why. Maybe it’s getting on that time of the month. Maybe I had too much time to think over the holidays. Maybe the various sad situations that surround me are just getting to me. I don’t know. All I know is that I’m in a funk – I’ve got the HPS blues. I hadn’t been to church for two weeks. First because I had a virus, and second because I was away in Wichita for Thanksgiving. As I sat eating a piece of apple spice cake one of the ladies brought on Tuesday night, someone commented on my absence. I explained I’d had a virus and the woman said, “Well, we appreciate you staying away to keep us from getting sick, but we missed you.” It was a sweet comment, but I felt kind of bad because my motivation for staying away had much more to do with feeling so incredibly tired and being concerned my immune system was under siege. Frankly, I was more concerned about them making me sick than I was about me making them sick. I was expecting to sing Christmas carols...

I heard from Candice’s dad this evening briefly as Candice was in the recovery area waiting on a bed upstairs. The procedure went well. The doctor seemed excited that he was able to gain access to the tumor so easily and he believes he was able to cut off all the blood supply. That means she probably won’t have to go through this again. Please pray that all the blood is cut off to this nasty little invader and the medicine the doctors delivered directly to the cancer cells is effective. I’m sure Candice would love to hear from you all if you want to leave her a message on their blog, www.angelsinvoice.com . I"m sure there will be more details there when the family gets home and settled.

Wednesday morning Candice Sipe (of Angels in Voice) will be going in for her chemoembolization to treat her liver cancer. The procedure doesn’t exactly sound like it will be much fun. Please pray that it’s successful and that Candice tolerates the treatment well. Please also pray for her sister Crystal and the rest of their family that they continue to have such amazing strength. You can stay updated on their progress at http://www.angelsinvoice.com/ .

Let me tell you a little Christmas story. Several years ago there was a musical group on Long Island in New York called Three’s Harmony. (Today they are known as “J”). Somehow (I don’t know the whole back story) they became interested in Hermansky-Pudlak Syndrome. It wasn’t because they had an affected family member. It was because somehow they became aware of us, and they cared. The group began holding annual Christmas benefit concerts for the HPS Network at Ashley’s high school. Every year the concerts grew (as did the Network). Last year I think the event generated about $10,000 for the HPS Network, one of our largest fundraisers of the year. Last year the group “J” did something even more amazing for us. They gave us a CD. The CD is roughly half covers of traditional Christmas favorites, and half original compositions. Not only did “J” donate their time and talent, but 100 percent of the revenue from the sale of these Christmas CDs, titled “Another Christmas” goes to the HPS Netwo...