Living on the frontlines

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

Besides trying to record the story of HPS, and my little life as well, I use this blog to help me keep track of my health things as well – so with that in mind here’s a health update. The days before Thanksgiving I was not only feeling exhausted, but my joints were killing me. They were beyond the merely annoying stage. They hurt! I have no idea what that’s all about. Wednesday when Phyllis and Nancy came to pick me up, I was very much hurting. But, by Thanksgiving day the pain was gone. I felt fine! I ate way too much for Thanksgiving and my tummy was just fine. After dinner I went on a walk and didn’t really feel out of breath or tired. It was great! Friday, however, was a more eventful day. That morning I changed my ostomy, but for some reason this time my stoma bled – and not just a little. I had a roll of paper towels and pretty much used them all trying to apply pressure to the bottom of my stoma to get it to stop bleeding. Had I been home I’d have a magnifying mirror and I could

While I was away for Thanksgiving those of you loyally doing your Web searches at www.goodsearch.com reached another milestone. We hit 2,000 searches done on behalf of the HPS Network during the Thanksgiving break. In fact, I think we’ll hit 2,100 by the end of the day. That translates to $21.00 for the HPS Network. More notably, however, is that almost half of that was raised just this last month. You guys are helping to get the word out, and the more folks we get to use the site, the more successful it will be. So, keep goodsearching – and keep encouraging your family and friends to do the same.

I took a picture of this tree just because I thought it was interesting. Look how it started to grow sideways before it figured out how to grow upwards. It made it's own path in life, probably stubbronly overcoming whatever natural forces were causing it to grow sideways from the beginning.

I thought I'd post a few photos of my cousin's farm for my east coast friends. I'm not sure you really get the effect from the photos though. The vastness is awesome when you go for a walk and you feel so small in the middle of all that space. The part of Kansas where I live looks different from this, however. It looks more like the East Coast with rolling hills and lots more trees. This first picture is just the very edge of a wheat field.

The picture to the left is my cousin Jesse's farm house. I didn’t get to blog about my Thanksgiving trip yesterday because I was so swamped trying to get caught up from being away four days. For those of you that didn’t know, I went to Wichita, Kans. for the holiday to see my family there. My aunt Phyllis and her friend Nancy drove all the way to Kansas City (about four hours) to pick me up and drive me back to Wichita. I’m so grateful to them for being willing to do that. Here in the Midwest public transit is pretty much non-existent. There are very few flights to Wichita these days (there used to be several a day) and the bus station is so far away from where I live that it’s $50 just to get to the bus – and then the bus ride is nearly eight hours because they stop in every town. That makes getting to Wichita very difficult and expensive if you don’t have someone to drive you there. I wanted to make the trip this year because I’m really not sure when I’ll be able to do it again.

The American Association of People with Disabilities runs the internship program in which Stacy (featured below) participated. The application deadline for this year’s program is Dec. 1, 2006. I tried to find a direct link for anyone who might come upon this and be interested, but to be honest, I couldn’t find it on the association’s Web site. Ironically, the site wasn’t terribly friendly for my vision disability. Many of the links are blue on a blue green background. There may be some way to alter that and I just didn’t find it – I just didn’t have time to hunt for the button if there was one. (Tons to do today) But, you can go have a hunt yourself, or better yet, just call them. I’m sure the number is there. The Web site is: www.aapd.com . Wouldn't be cool to have an HPS'er working on the Hill? I wish I'd known about the program in time to get it into the newsletter!

When I posted a story a few weeks ago about Stacy Cervenka, I got a number of comments and e-mails. Someone (they didn't leave their name) brought the following article about Stacy to my attention. It seems Stacy got a promotion. The article ran in Roll Call. I hope Roll Call will forgive me for posting it here. Sometimes it's easier to get forgiven than it is to get permission. There were some great photos in the Roll Call peice, so if you're really interested you might look it up at www.rollcall.com . By Elliott WilsonRoll Call Staff October 26, 2006 Photo caption: Capitol tour guide Stacy Cervenka points upward to the Rotunda's focal point, "The Apotheosis of Washington." Capitol tour guide Stacy Cervenka points upward to the Rotunda's focal point, "The Apotheosis of Washington." As cameras flash, she describes the painting of George Washington rising to the heavens, accompanied by women representing victory and liberty and 13 others symboliz

If you scroll all the way to the bottom of this page you’ll see one of the new awareness banners for Hermansky-Pudlak Syndrome (HPS). A big thanks to Sandy who took it upon herself to design these. I’ll be posting more of them later to show them off. Right now I need to e-mail Sandy and ask her how to size them so they fit on my blog. Grin! But, for those HPS’ers who have wanted an HPS banner to put on their blogs – or for anyone else who would be willing to help us generate awareness about HPS – please feel free to e-mail me at: hkdawn@yahoo.com . When we get them all ready, I’d be happy to send you a banner. The banners not only help generate awareness, but they also help to get the HPS Network Web site ranked a bit higher in search engines. And yes, I’m home! I’ve got tons to do tomorrow! But, I’m beginning to work through the backlog. Grin!

First, let me apologize for any typos, spelling errors etc. up front. I just got access to a computer for a few moments, but it doesn't have any of my adaptations made to it, so I can't actually see what I'm typing. I really hope my fingers are on the right row! Second, Happy Thanksgiving to everyone out there! I really wanted to get a Thanksgiving post done before I left home, but with work etc. it just didn't get done. My aunt and her friend are staying with me when I go home so we can go to the Plaza in Kansas City and see the lights - but boy are they in for a mess! I didn't get all the cleaning done before we had to leave. I cleaned the bathroom, but I was out of vinegar so had to use old cleaner I had before I started having these breathing problems. I just got so winded trying to clean that I couldn't finish it all. I haven't dusted my bedroom etc. I vacummed, but not well. Today I was thinking to myself that if we went around the table and asked what

The following McClatchy News Service story appeared in the Kansas City Star, the Wichita Eagle, the Minneapolis Star-Tribune, the San Jose Mercury News, and undoubtedly a number of other papers. But, it just came to my attention in the National Federation of the Blind’s magazine, The Braille Monitor. (Check out the NFB at: www.nfb.org .) I’ve got to confess, I’m not a Sen. Sam Brownback fan. In fact, when it comes to politics, we’re probably about as opposite as opposites can be. But, I’ve got to give him kudos for creating what appears to be such a great working environment for people with disabilities. And, hey, as much as he makes me nuts, he gets a brownie point for hiring someone who is first qualified, and second, blind. I've also got to give a big kudos to the reporter that did this story. So often when blind people show up in the media, it's in a very insulting manner. No so here. These are the sorts of stories we need to see more of in the media. By the way, I'm al

It’s official. I’ll be back for my next visit at the National Institutes of Health, a.k.a Club Med, the week before Christmas. Any details other than that are a bit up in the air. No, they won’t let me come in on the weekend and hang out with Ryan, so I’ll arrive and be admitted Monday. I’m also not sure if I’ll be able to get a pass to leave. Thanks to my iffy pee last time, they seem a little leery to promise to let me roam the streets in the evening and do anything that might affect my “samples.” Whether I’ll get to see the OBGYN and whether they’ll get another lung lavage on this trip also are up in the air, but I think they’re looking doubtful. Poor Kevin is going to be having quite the week. Apparently he’s got nine folks from Puerto Rico in that week – none of whom speak English. So, I’ll be a bit of the odd one out and linguistically challenged. Hey, if someone else gets admitted to the trial, that will work for me! Since the scheduling will have to be a sort of go-with-the-flo

Today has been one of those days that just hasn’t gone according to plan, and oh how it frustrates me. I think I’ve still been battling this virus as I’ve just felt so, so tired. I didn’t manage to even wake up until noon. My apartment is still a pit and it’s stressing me out. People will be dropping by to get me for Thanksgiving and it needs to be presentable. I’ve also got some HPS projects that absolutely have to get done this weekend. They can’t wait. I know that might seem like something that can be put on a back burner until I’m caught up – but it isn’t. I can’t yet talk about what I’m working on, but if it is successful it will be about a 100 times more important than whether my apartment is clean. My joints just ache and Tylenol isn’t doing a thing for them. I don’t want to take the narcotic the doc. gave me because I don’t want to spend the day drugged out and foggy in the head. I never take the stuff unless I just can’t stand it anymore. So, instead I soaked in a very hot bat

I was getting ready for work on Wednesday when a story came across National Public Radio (NPR) that I must confess got my dander up. It seems cleaning up the online image of the every-day person is getting to be quite the business. The demand is created by corporate human resource types that have gotten wise to the fact you can find out a lot about a person online. I know about that. I’m a reporter – grin! Google and I are great friends! Careerbuilder.com evidently recently did a survey of 1,000 hiring managers and found that 1 out of 4 regularly google job applicants to dig up the personal dirt. One out of 10 has actually not hired a job candidate because of something they found online. Geesh, imagine what some HR flunky would find if they googled me? Well, I’ll tell you. This blog is the third entry that comes up if you google my name. The first two are some other Heather Kirkwood who is an attorney. My bio on www.expoweb.com , (my professional persona) doesn’t show up until around

I’m feeling much better than I was earlier this week. I’m still tired, and still have a bit of a sore throat. But, the mouth sores are gone and the joint pain is back to its normal level of annoyance as opposed to actual pain. And, the little red dots are gone. Everyone who’s in the know about such things seem to agree – it was probably a virus. That’s great news to me. A normal, run-of-the-mill, everybody-gets-them virus. Yeah!

Regular readers have often heard me mention Homers – a coffee place about two blocks from where I live. Homers is a Christian coffee house, but what I love about it is it’s a comfortable place to hang out or bring friends regardless of their faith. While it’s no secret that Homers is a Christian business, they don’t exactly hit you over the head as soon as you walk in the door with a scary, “Do you know Jesus?” Instead, a newcomer would make this discovery after browsing the books on the book shelves, observing some of the bible study groups that meet there, or showing up for a musical event. On Friday and Saturday nights there’s live music. During the summer there’s an open jam session called “Picking on the Patio” and when there’s not live music Homers is sort of my office away from home. I remember when Homers opened five years ago I was thrilled that there would be another coffee place in the neighborhood. There’s another one, Mildred’s, but they close at 6:00pm. I’ve never been a

Got a sense of humor? If you can take parody for what it’s worth, then you might get a kick out of watching “The Albino Code.” It’s a short flick that’s a parody of The DiVinci Code. Some of you may remember that many people with albinism were offended by the portrayal of the monk assassin with albinism. Well, Dennis Hurley, a person with albinism, decided to have a little fun with the whole flap and this film is the result. He’s trying to win a prize, so if you’ve got some time you can vote for his film at the Hyden Film Festival. The only catch is you’ve got to watch 10 films for your vote to count. I know, it’s a big time investment – but if you’ve got a little time give it a whirl. Check it out at http://www.albinocode.com . (You’ll see the link for the film festival at the top right of the page.) Just remember, it’s all meant in good fun! You can also learn more about Dennis at www.dennis-hurley.com .

I did it. I stayed home from work today, which is KILLING me. A precious day! I didn’t sleep well last night. I spiked a fever of 102, my joint pain (which has been worse lately) was pretty bad so I couldn’t get comfortable, and these sores in my mouth hurt. My throat hurts too, and of course, I just feel so incredibly tired. So, obviously something’s up. The doc. seems to think it’s a virus, and there isn’t much they can do other than let me take Tylenol. But, as always, if the trend doesn’t take care of its self in a few days then we’ll have to move onto other possibilities. I can’t help but wonder if I’m having some sort of colitis flare up. The “colitis” of HPS can happen anywhere in the digestive track, and some HPS’ers do get mouth sores. That, combined with my joint pain being worse (which tends to go with a flare up) and I wonder. But, then again, the mouth sores are better tonight so maybe there’s no connection. Having HPS can make you such a hypochondriac. You don’t want to w

As I was listening to the radio at work today the DJ made a passing comment that today was Act of Kindness Day. I looked it up, and indeed a movement that got its start in Japan has deemed this Act of Kindness Day. There’s a foundation associated with this concept, and they’ve got several such events planned throughout the year. To be honest, I haven’t had time to read up on the foundation or the movement to tell you much about them. But, isn’t the idea its self nice? I know this might seem corny, or Pollyannaish, but imagine how much better the world around you would be if we all set out to do a random act of kindness every day. In fact, we HPS’ers benefit from so many acts of kindness, although most probably aren’t random. I think one of the things I like about the concept is that it requires us take the focus off of ourselves and think for a minute about someone else’s troubles or needs. Those of us with HPS are so often the subjects of others’ efforts to reach out and do something

It’s been a completely uneventful day today. I slept very late. Then I got out of bed, plopped onto the couch, and slept some more. I did manage to do some cooking for the next week, a load of laundry and to pay the bills. I was supposed to have a cleaning blitz today though. My apartment should be nick named “the pit.” I’ve put off all but the most basic housework for several weeks now as I tried to work on extra freelance stories and this silly fundraiser that was a flop. Today was the day to get caught up, but I just couldn’t do it. On days like today I just feel so frustrated. Why am I so tired? It isn’t my CPAP. It isn’t that I didn’t get plenty of sleep. It isn’t even that I’m not feeling well for some reason. I’m just tired, really tired, and all I want to do is sleep. But, as I look around my apartment at the mess I can hardly stand it, and I feel so guilty, so lazy, that I just can’t seem to get my carcass into high gear and dust and mop and vacuum for very long before I’m onc

My latest venture to raise money for the Hermansky-Pudlak Syndrome Network, I must confess, was a flop. I managed to finish four Christmas ornaments to get into the office craft fair, which as the entire thing happened in a conference room turned out to be just fine. I also took along the HPS Network Christmas CD. I set up a little listening station so people could hear what the CD sounded like etc. and optimistically thought I might sell several of them. Turns out I sold one CD and one ornament. Judging from the product left by the other employees, I don’t think anyone else sold much either. The several times I walked past the conference room it was crowded, but I think everyone was window shopping. The one person that sold much of anything brought baked goods. Note to self – if we do this next year spend time baking and not painting! Grin! This may seem silly, but I was very shy about bringing my little craft. I didn’t go into an art-related profession for several reasons, one of th

At least from the pictures on the Sipe blog, www.angelsinvoice.com , it looks like Candice is doing quite well. You’ll also note that the Sipe family sent part of the biopsy taken from Candice’s lung to Dr. Gahl at the National Institutes of Health for research. I wanted to take a moment to blog about that decision for two reasons. First, I want to publicly thank Candice and let you all know what a special gift that was. Second, I want to draw a little attention to the need for tissue collection so that the HPS’ers reading this blog can file this away for future reference as something they might want to consider, and something we should all be discussing with our families. HPS types 1 and 4 cause pulmonary fibrosis. How this happens exactly, however, remains a mystery. One way to uncover the truth about this mystery is to study lung tissue. The problem is that because of the bleeding disorder associated with HPS, doctors are extremely leery to try to take tissue samples from HPS patien

I’ve had several e-mails today wanting to know if I know how Candice’s surgery went today. I know she came through it okay, but I don’t know what the biopsy showed. I’m sure when they’re ready to share the results you’ll find it on their blog at www.angelsinvoice.com . In the meantime, I’m sure they’d appreciate everyone’s prayers. With both Candice and her dad fighting cancer right now, I can’t even begin to imagine the stress for everyone. Like HPS isn’t enough! It’s hard to be the person not well, and it’s hard to watch loved ones fighting these battles. But, as you know, the Sipe family relies heavily on their faith and is confident God has a plan in everything they’re enduring. I’m sure, however, they’d appreciate your support as well.

I’m swamped, but I feel the need to blog. I’m trying to write a story just now (another freelance project) and I can’t concentrate because of all the other thoughts swirling around in my brain. There’s so much to blog about, and I feel like I only get about a 10th of it into the computer. As this has pretty much become a Hermansky-Pudlak Syndrome blog, I wanted to share a few HPS voting stories. Undoubtedly there were thousands of Americans yesterday who didn’t get to vote. They were having busy days, had to pick up the kids, or hated the candidates (which I have to admit is pretty easy to do.) At the same time, there were other Americans who couldn’t be kept from the polls no matter how many obstacles were thrown in their path. If you’ve been reading Katy’s blog, ( www.katysblog.com ) than you know her platelet count is down and she was admitted to the hospital again today. Yesterday, however, despite the shivers and the cold and not feeling well, Katy insisted on voting. There’s phot

Dr. Gahl is a well-known and much loved doctor in the Hermansky-Pudlak Syndrome community. He's been the primary investigator for HPS since the beginning. He was key to the National Institutes of Health taking on research into HPS, and although he's climbed the research career ladder and now works with several other doctors on HPS research, he remains directly involved in our research. As everyone in the HPS community knows Dr. Gahl, I thought I'd post the following press release about him issued by the NIH back in 2002. I was actually looking for the correct spelling of the name of a doctor working in his lab, and stumbled upon this. I thought it was neat to see all the other things Dr. Gahl has accomplished. We are so blessed to have his mind working in our favor. NHGRI Names New Intramural Clinical Director Dr. William A. Gahl to Lead Clinical Research Initiative Aimed at Rare Diseases November 18, 2002 BETHESDA, Md. - The National Human Genome Research Institute (NGHRI)

Today it was official. The income from the little Google banner at the top of this page officially went over $100 today. It’s been on the blog since July. I’ve been worried that people will think I’m trying to make money off of my experience with HPS, or that of the others that have shared their stories here. Nope – it is my plan to donate the revenue generated by this blog to the Hermansky-Pudlak Syndrome Network. Hitting this magic number means that by the end of December I should hopefully get a check that I can then send to the Network to help meet our many, many expenses. So, anything earned the rest of this month is just gravy. I"m just excited to finally hit the goal number!

It’s been a long weekend. I’m NEVER painting these silly eggs again. I’ve only got two, almost three, finished and I can’t stand to look at them anymore! Today my bleeding was somewhat improved, although I’ve been feeling really tired today. It took me until noon to even get moving. I’ve been sluggish all day. This evening I perked up, and thinking that perhaps part of my problem was cabin fever (I hadn’t been out of my apartment all weekend) I decided a walk would do me some good. Karen and I chatted on the phone earlier today, and she warned me that going for a walk would probably get the bleeding going again – and she was right. I’d walked about six blocks and whoosh, the flood gates were open yet again. I’ve been back to heavy bleeding this evening. What puzzles me is that given the level of bleeding I’ve had this weekend, I’m surprised I’m not feeling worse. I’m tired, was achy Friday night – but now with the exception of being tired, I feel fine. I keep wondering if maybe I shoul

I think I’m going to have to admit it. I’ve got to have a talk with Dr. Meredith. (Dr. Meredith is the only OBGYN I know of in the country who has taken on the needs of women with Hermansky-Pudlak Syndrome.) This is the third month running that my female cycle has been, well shall we say, over the top. Yesterday, after a night of bleeding that required me getting up to deal with it about every hour, I seriously considered staying home from work. I’d put in enough extra hours this week that I really only needed to work about three hours anyway to be at my 40 for the week – and I had enough that I could do from home that I could easily get those three hours taken care of. It seems silly to go to the bother of going into the office when you feel like you’re going to be constantly in the bathroom anyway. And, I was incredibly tired. But, always afraid of using too many days, afraid of the political implications for my job if I’m seen to be gone too much etc. – I went into the office. When

It’s been a few days since I’ve blogged, and I think I’m getting addicted to blogging. I feel like I go into a kind of withdraw if I don’t get my personal mind dump at the end of the day – grin! I’ve been very tired the last few days, wrapping up the magazine at work (yeah, I know, it was supposed to be finished Wednesday) and taking care of a few HPS things when I can. My to-do list really does need some attention though. But, in lieu of anything pithy to share tonight, I thought I’d update everyone on a few things I’ve mentioned here or on the HPS listservs. As many of you know, I do relatively frequent searches for anything related to Hermansky-Pudlak Syndrome, pulmonary fibrosis or albinism. A few weeks ago I was very delighted to stumble across the blog of a college student aspiring to go to medical school. I was thrilled to learn that as part of one of her classes she was studying tiny worms believed to have an HPS gene. She seemed thrilled to be doing actual research instead of