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November 2008 - Posts
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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.
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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 coming out, just to be disgusting for grins, was clear. Why pay a copay and cab fare just to go in and have someone pat you on the head and tell you to drink plenty of fluids and rest?
So, I was just going to tough it out.
By Thursday I had been unable to sleep for two days thanks to my coughing. Even my neighbors could hear me. And the cough seemed to be kicking up the old asthma. I felt tightness in my chest and felt irritation every time I breathed out.
Every little thing made me very out of breath, like just walking to the bathroom.
Okay, I said, so much for the virus. I need help.
I called my doc but couldn’t get in for another 24 hours. I guess the heavy breathing on the phone wasn’t convincing enough. So, I went to urgent care.
Because I didn’t feel like my oxygen levels were low – just that I was working harder than normal to breathe – I opted for urgent care rather than the ER.
I spent about seven hours there and got sent home with Tussinex. This stuff is great for coughs – but it does make you very sleepy.
By this time I’d coughed so much that my stomach muscles were incredibly sore and I couldn’t cough up the junk in my lungs. My back just hurt. My joints were all hurting.
The cough medicine put me out for about 24 hours straight. In the meantime, however, I got very dehydrated. When I started to feel a bit better and tried to get up to fix some dinner etc. my blood pressure dropped to 90/56. Normally I’m trying to keep my blood pressure down, and I hadn’t even taken my blood pressure meds that day because I slept through my dosage time.
My back was killing me, especially where the kidneys are – so it was time to get tanked up on fluids.
Donna put me on germ patrol with instructions to stay away from people and to wear a mask if I went out. I pretty much spent the next few days in bed. I’ve got disability paperwork etc. to work on, but I couldn’t. Even working on the computer or talking on the phone was wearing me out and making me cough like crazy.
When you have HPS, getting a cough is even that much more scary.
I can just picture these foamy macrophages in my lungs getting angrier by the minute and calling for those fibrotic cells to rush in and “fix” the problem. I know that’s probably a simplistic look at it, but still, nothing going on in my lungs can really be good.
Today I finally was about to talk on the phone just a bit and do a little housework – I do mean a little.
I can’t believe a simple cold has screwed up my system so much.
Thank God I’m already on disability leave – I’m pretty sure I would have missed about five days of work over this latest little episode. Other people can just “suck it up” and go to work sick, but for an HPS’er, these things can become serious quickly and can’t be ignored like that.
It’s just so frustrating when you want to be getting things done and you can’t even when you try. But at least I didn’t have the added stress of worrying about work.
My family is on my case about my long-term plans, and I don’t know what they will be. I’m very worried about returning to traditional employment because of things just like this – it isn’t that you miss work every day, but between the NIH visits and the routine “little” HPS issues and even just a cold – it isn’t long before you’re missing way too much.
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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!
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 outlined.jpg) outlined.jpg) 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 Silent Night, as well as some one-of-a-kind music. So, give a gift that will keep on giving for years to come!
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It won't be long before many of us will be holiday shopping. The stores are already playing holiday music and putting out decorations. This is just a reminder that you can do your holiday shopping and help us to raise money to find the cure for Hermansky-Pudlak Syndrome at the same time. Go to www.igive.com. This is an online "mall" that has more than 650 merchants including stores like Eddie Bauer and Amazon.com. If you go to the merchant's site through the igive site - and you've signed up to support HPS - the HPS Network will get a percentage of the money you spend shopping. The exact amount depends on the merchant. Every little bit helps! Hey, if you're going to shop for the holidays anyway, might as well shop for the cure!
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More sad news today from Burundi. Another girl with albinism, only six years old, was killed. Here's the story for those following this horrible trend. Albino girl, 6, murdered, dismembered in Africa
From correspondents in Bujumbura
Agence France-Presse
November 17, 2008 11:24pm
CRIMINALS with suspected links to witch doctors have murdered a six-year-old albino girl in Burundi in eastern Africa and taken her severed limbs.
"A group of bandits armed with rifles attacked the home of a six-year-old albino called Cizanye,'' said local official Remi Sengiyumva.
"These criminals decapitated her and then chopped off her arms and legs, which they took with them,'' he said.
To read more go to: http://www.news.com.au/story/0,27574,24667825-23109,00.html
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This is just a reminder. Please don't forget to update your contact information with the HPS Network if you move or have a contact info change. We had a lot of returned mail from the last mailing. We can't keep you updated, or contact you about a new protocol or research development that might benefit you, if we can't find you.
Don't forget to keep your contact information with the Hermansky-Pudlak Syndrome Network up to date!
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I haven't posted recipes in a while, but am still working on producing an HPS cookbook for a fundraiser next year. Nancy sent in this recipe with the upcoming holidays in mind. It sounds so yummy!
Spiced Cranberry Sauce w/Chardonnay & orange zest:
Serves 8 to 10
This tart sauce has a hint of spice that enriches the flavor of the cranberries. Serve with turkey and dressing or spoon it over ice cream, yogurt, pancakes or waffles.
Ingredients
10 ounces (about 3 cups) fresh or frozen cranberries
1 cup dry chardonnay
1/3 cup sugar
1 teaspoon orange zest
1/2 teaspoon ground ginger
1/2 teaspoon ground nutmeg
Method
In a small pot, combine cranberries, chardonnay, sugar, zest, ginger and nutmeg, cover and simmer for 15 minutes. Using a potato masher or whisk, mash sauce until most of the cranberries pop. Cook, uncovered, until thickened, about 15 minutes more. Serve hot or room temperature.
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 They say an army moves on its stomach - and so does the HPS board. Donna cooked dinner for all 13 of us.
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 As Marie said at last year's board meeting, "You know doc, some people bring wine to dinner..." Dr. Seward, the only doctor with a private practice devoted to patients with Hermansky-Pudlak Syndrome (HPS), serves on the HPS Board of Directors and once again brought flu shots for everyone. I was so glad as I had forgotten to ask to get mine at my last doctor appointment. Here Carmen is about to get her shot. Flu shots are important for those with HPS. The last thing any of us need is something that could generate an infection in our lungs.
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As I haven't posted in a while I just wanted to post and say that I'm okay. As usual, lots to blog about, but I'm tired. We had a great board meeting - it was an all weekend meeting. I think everyone is exhausted.
More catching up later.
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 I took this pick from the way other side of the harbor.....couldn't even see the lighthouse without the lense!
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 Another example of my loving the distance lense on my camera - without it I could probably trip over this duck and not see it.
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