Living on the frontlines

Way to go to those of you that have been shopping for the cure at www.igive.com . The Network will be recieving a check for $28.00 in the next few days thanks to your efforts. Keep up the great work - and if you've got to shop online, try shopping for the cure at www.igive.com . They now have more than 700 merchants to buy from.

The following announcement ran in the local paper in Oyster Bay. If you happen to live in the area and want a great way to get into the holiday spirit, come on out to this musical event. There will be snacks and a "Christmas Store" full of holiday gifts that will benefit the HPS Network. Please pray for the success of this event. It's one of the larger HPS fundraisers of the year. Here's the announcement: The 7th Annual HPS Benefit Christmas Concert will be held in the Oyster Bay Performing Arts Center at Oyster Bay High School on Friday, Dec. 5 at 7:30 p.m. The Long Island musical group "J" will feature the music of JoAnn Criblez and John DiGennaro. The concert is free though any donations collected will help benefit people with Hermansky-Pudlak Syndrome (HPS). For more information visit www.hpsnetwork.org.

I think this past week I set a record for this blog. I don’t think I’ve ever gone so long without blogging – but to be honest, I felt like crap. And if I’m not even blogging, you know I’m not feeling well. Last Tuesday I started to feel yucky. I was congested, felt like I had a sinus infection, sore throat and a cough. I was pretty sure it was a virus because I was already on an antibiotic. Regular readers will remember I’ve had this rather embarrassing problem for the last year in that I’ve contracted some kind of skin infection. It seems isolated to my breasts, but as the sores heal, they bleed. And being that I’m an HPS’er, they really bleed. I’ve missed work over these things bleeding. It sometimes bleeds so badly I look like I’ve been in a horrible accident, or shot or something. One of the doctors I saw in New York (more on that later) put me on an antibiotic for that. It has helped, but hasn’t cleared the infection. At any rate, this was a pretty good antibiotic and everything c...

While I was offline hacking up a lung, I got an e-mail from the folks at www.goodsearch.com . The checks for the last year have been mailed. This is a bit of an estimate, but I believe we earned $141 this year. A nice chunck of that came from the Tillman's HPS video that was a winner in the Goodsearch contest. Way to go everyone! Remember, those pennies really do add up. This is one fundraiser for which we could be earning even more! Only a few folks are really doing it. Also, goodsearch now has www.goodshop.com . It works very much like www.igive.com . Shop in either online mall - both have a lot of holiday specials going on now. Again everyone - thanks for doing your part for the HPS team and goodsearching!

I've been under the weather (more on that later) and so I haven't posted an update in two weeks. But, in the last two weeks we've added two new people to the HPS database - that puts us at 46 to go on the 100 People Search.

Why go to the mall when you can give a gift of the cure? The Hermansky-Pudlak Syndrome Network is selling its holiday CD this Christmas season and 100 percent of the proceeds go to help fund the Network's mission to find the cure for HPS. If you click on the banner above you'll be taken to the HPS Network Web site where you can buy the CD online. Then, send the Network an e-mail and let them know where to ship it. The Network will happily gift wrap the CD for you and include the above card with an added message from you. If you need help, you can also e-mail me at hkdawn@yahoo.com and I'll forward your request to the Network. (I am not shipping CDs - I can only help you contact the Network if you need it.) The Christmas CD was a Christmas gift to the HPS Network from the musical group "J." They have donated their time, talents and the proceeds from the sale of this CD, Another Christmas , to the HPS Network. The CD has several holiday favorites such as Sil...

You’ve probably noticed I didn’t post a lot this week. I thought that when I stopped working my fatigue would likely improve. Being under so much stress all the time has to make a person tired! Surely if that situation was dealt with, I’d get a little more get up in my get up and go. The reality is I continue to struggle with fatigue in a big way. I try to get through the night with my CPAP, but I can’t always make it. Today has been especially bad. I feel like I’ve been in a cloud all day. My sinuses are acting up and I kept waking up in the night feeling like something was stuck in my throat (post nasal drip) and feeling like my ears needed to pop. My joints have been acting up this week too. Finally the runs subsided, but were replaced by the opposite problem. Even with an ostomy, one can get constipated. Usually grape juice does the trick, but this time I drank a whole bottle of the stuff and nothing came through for almost a day. My stomach has felt crampy all week. That’s the upd...