Living on the frontlines

I don't normally do this, but I'm feeling like I'm supposed to do this, so I'm doing it. I keep statistics on my blog, very general statistics (no big brother thing going on here or anything). One of the things I can track is search terms and a very general location of an ISP. I think there's possibly someone out there in Washington State who's got some big questions to ask about HPS. I always wonder when I see these search terms if it's someone newly diagnosed. If you're out there, please feel free to e-mail me at hkdawn@yahoo.com and put HPS in the subject line. I'd be all too happy to answer any of your questions or point you to anyone else I think might be able to answer them better.

One of the things I discussed with my doctor on Tuesday was this sore I’ve got that just won’t heal. Sure enough, it’s infected and so the doctor gave me an antibiotic and some antibiotic ointment to put on it twice a day. Already the antibiotics are doing their job and the thing has finally scabbed over, but the antibiotics haven’t been making my tummy very happy. Tuesday night I was very nauseous and having horrible reflux. I was up eight times in the night feeling as though I was going to throw up (which I did once), feeling as though my tummy were full of acid and trying to stay ahead of the runs. So much for sleep. About six in the morning I decided I wasn’t going to work. I knew I wouldn’t be productive on so little sleep, and although the tummy troubles seemed better, I was still feeling queasy. I slept until 9:30 am and then called and told my boss I was working from home. With a little medicine for the tummy, I seem to be doing much better today. But, it’s always a dilemma whe

You can now buy the HPS Christmas CD online at the HPS Network Web site, http://www.hpsnetwork.org/ . I've been trying to repost the sample, but I can't get it to work. I think if you go to this url on the blog, however, you'll be able to find it. http://heatherkirkwood.blogspot.com/2007/11/hps-christmas-cd-sample.html Happy Christmas Shopping!

After Thanksgiving, the topic of cooking with low vision has been a pretty active one on the HPS adults yahoo group. While typically it’s pretty important to the HPS adults that they have a place with just others affected by HPS to commune, vent, express frustration about health issues etc, sometimes a topic like this comes up and I think to myself, geesh, I wish the parents of low-vision/blind kids could be a fly on the wall for this topic. As with all topics related to being visually impaired, this won’t apply to everyone, however, a number of the HPS adults shared stories about their challenges learning how to cook. While some are regular chefs, others completely avoid the kitchen having been turned off to it in childhood. It can be hard for sighted parents to teach legally blind kids to cook. Often they’re so accustomed to relying on their vision to cook that they can’t conceive of how to do these things with poor or no vision. They are often fearful of their kids getting cut or bu

Some information about this book, All Children Have Different Eyes , came across my desk today. I must preface this by saying that I haven’t seen or reviewed the book (it comes out in December) but I thought the book would be of interest to both the HPS and general albinism community. I know as a kid I was always looking for someone in literature or movies that was like me, that I could identify with – so I have a feeling some of the kids out there would enjoy a book with characters like them. The Web site is: http://www.lowvisionkids.com . And if anyone orders the book, please let me know what you think.

I didn’t intend to miss work today. I had a routine doctor’s appointment and I expected to be back in the office by noon. HA…one of these days I’ll learn there’s no such thing as a routine doctor appointment. If it’s not medical, it’s logistical – and sometimes it’s both. I had a little list. Since I started the high blood pressure medication, my blood pressure is improved, but it could be better. I thought maybe I needed a higher dose. I needed some new scripts for my regular meds. I’ve got this sore that seems to have become infected and isn’t healing – I was concerned I might need some antibiotics. Lastly, I wanted to talk about my insurance issues. Was there anything that could be done so I wouldn’t have to change all of my doctors, some bureaucratic loophole I just didn’t know about? Pretty routine list. I had made a time call for my cab an hour before my appointment. Experience has taught that when dealing with the reliability of taxis, one should always build in cushion time. Su

Regular blog readers know Candice and Crystal Sipe, otherwise known for their ministry Angels in Voice. Candice and Crystal use their music to educate the public about Hermansky-Pudlak Syndrome. Recently they were interviewed on their local Christian radio station. The two talk about their faith, their ministry, and their life with HPS. If you’d like to hear the interview, go to: http://www.familyvaluesradio.net/ . Go to the “click to listen” button on the left side. Scroll down (they’re in alphabetical order) to The Vine Ministries by Pastor James Hayes. The program takes 27 minutes to listen to, although it will likely not be up past Wednesday, so hurry up and listen! Grin!

These past few days I’ve been trying to think of something really awe inspiring to say about Thanksgiving. I’ve been thinking of all the things I’m thankful for, like supportive friends and health that’s reasonably good, all things considered. But, the truth is I’m not feeling awe inspiring. What I’ve been most thankful for these past few days was four consecutive days off! It’s been like a little version of heaven. HPSland has been pretty settled, and I actually managed to make it through a 24-hour period without worrying about something associated with work. I’ve slept a lot, and eaten too much, and enjoyed having Ryan around. I went for a nice walk this afternoon in the sun. I had hoped that after four days off I’d feel rested, but honestly, I feel as fatigued as ever. Oh well, I really did enjoy the mental break if nothing else. Tomorrow I have to go back. It’s going to be a tough next few weeks. We’re short staffed, as always, and we can’t wiggle around too much with the next dead

I have a number of pictures I've been meaning to post. This one is from the recent HPS board of directors meeting. As I've said before, it's very important for people with HPS to get flu shots. And, it can also be important for our families to get them too - especially if you're on medication that dampens your immune system. And as your board, we practice what we preach! Dr. Seward arrived at the board meeting with flu shots for anyone that didn't get them already. As Marie DelVecchio, an HPS mom, put it, "You know doc, some people bring wine to dinner." HA! This is a photo of Dr. Seward giving Ashley's dad, Richard, a flu shot.

This is another post I'm sharing as a general FYI. If your children are learning braille, here's a great way to reinforce that braille is cool - even Santa thinks braille is cool! I know a lot of children with albinism don't learn braille as a matter of course, and I know that it's a topic of great controversy. But for those out there who are learning it, I thought they might find this fun. FOR IMMEDIATE RELEASE CONTACT:Christopher Danielsen Public RelationsN ational Federation of the Blind (410) 659-9314, extension 2330 (410) 262-1281(Cell) cdanielsen@nfb.org National Federation of the Blind Partnerswith Santa Claus to Support Braille Literacy Blind Children to Receive Letters from Santa in Braille North Pole (November 19, 2007): Once again, Santa Claus has enlisted the help of the National Federation of the Blind to respond to letters from young Braille readers. Blind children who wish to send Braille letters to Santa can submit their letters to the National Federatio

Ingredients 1 orange 2 tablespoons butter 1 egg 1 cup sugar 1 cup chopped cranberries 2 cups white flour 1/2 teaspoon salt 1 and 1/2 teaspoons baking powder 1/2 teaspoon baking soda Preheat the oven to 325 degrees. Butter a loaf pan. Grate the rind of the orange into a bowl and then squeeze as much juice as possible into a large liquid measuring cup. Add enough boiling water to the squeezed orange juice to make it 3/4 cup. Put the butter in the bowl, and add in the orange liquid and the rind to melt the butter. In another bowl, beat the sugar and egg together. Add the remaining ingredients and the orange mixture together and blend well. Spoon into the pan and bake for one hour. Allow bread to cool on a rack. Note: I usually buy the small loaf pans and double this recipe. It makes four little loafs so you have some left over to give as a holiday gift.

Here it is! Our turkey, thawed, bathed, baked and now about to be eaten! It really was much easeir than I thought it would be.

Ryan and I pulled off the Thanksgiving feast, and what a feast it was! We ran into a little trouble with the turkey not wanting to defrost. Ryan named the bird “Bush” and we gave him a bit of a “bath” this morning trying to get him nice and thawed out. We were successful (provided neither one of us gets food poisoning this evening) and we just finished eating. Ryan, bless him, is in the kitchen doing the dishes. I’ve done four rounds (small kitchen so you have to keep up with the dishes) and I’m worn out. For my first ever turkey adventure, I think it went very well. The meat was tender and fell right off the bone with almost no effort. And, perhaps even more amazing for this single girl, I somehow managed to get everything done at the same time! I’ll be posting some pics and recipes and maybe something thoughtful about Thanksgiving later.

One of the interesting tools I’ve built into my blog is the ability to see the search terms people use to find it. Often, they’ve plugged in some burning question about HPS, and likely not found it easily on this blog. I have no idea who they are or how to reach them to give them the answer. So, here are answers to some of the questions people seem to have. Please keep in mind I’m not a doctor. I’m just a person with HPS. 1. Who should be tested for HPS? I know there will be many that won’t agree, but in my ideal world testing for HPS would be done as a screening for all children with albinism. HPS is very rare. Most children with albinism would test negative. But, for those that test positive, they’d have the advantage of knowing and being able to take precautions. I feel this way because I’ve heard and seen too many stories about people that didn’t know and ended up in scary situations as a result. 2. How does one test for HPS? If you’re interested in testing, contact the HPS Network

I’ve done a lot of things in my life. I’ve traveled internationally independently with my white cane. I’ve combated construction workers that wouldn’t return my calls as a reporter by showing up on the construction site, white cane in hand, and refusing to leave until my questions were answered. I’ve lived on my own since I was 18 years old. Not that these are huge life achievements or anything, but typically I’m not one to let something scare me off. Until this year I’ve never had the option of cooking the Thanksgiving turkey. As everyone’s “single friend” I tend to get invited places for the big meal. All I have to do is show up with a side dish. But this year Ryan is here visiting and we decided to have our own Thanksgiving feast. This meant I had to come up with a turkey. I’ve never cooked a turkey before. My mom swears it isn’t hard, but still, to someone used to cooking her little single chicken breast, even a smaller bird looks daunting. I thought about ordering one already cook

If you haven’t already, sign up at www.iGive.com so you can help us window shop for the cure. IGive is an online shopping mall with more than 650 stores. They are all well-known brands like Eddie Bauer, OfficeMax or Expedia.com. If you shop online through the iGive mall, the merchants give a percentage of your purchase to the charity of your choice. Currently iGive also has sweepstakes going. They’ll give away $1,000 to five charities a month. You can earn entries just by window shopping at iGive.com. You don’t even have to buy anything. Just browse, do a little Christmas shopping research etc. Who knows – maybe we’ll get lucky!

Ryan arrived safely and scarfed down his left over pizza happily. He’s pretty easy to please I have to say. He doesn’t care that the apartment isn’t perfect – he just goes with the flow. We put off going to the grocery partly because I was feeling a bit weak and wobbly for some reason, and partly because we were going to my friend Tina’s that evening anyway, so the groceries really could wait another day. We met Tina and Allyssa, one of our former camp fire kids who is now about to graduate from high school, at a bar and grill sort of place called Governor Stumpy’s. It’s a great little place in the Waldo area of Kansas City with a wide variety of food, so everyone is always happy. I hardly ever eat beef, but I treated myself to ribs and baked apples – yummy! Ryan, predictably, had a hamburger and a beer. Tina and Allyssa were quite worn out as they’d done a fundraiser run for diabetes that afternoon. We all went back to Tina’s. Ryan and I had rented the DVD “Amazing Grace” and three of

I’m so excited! Ryan is on his way – he should be here in just a few minutes. I always enjoy it so much when he comes to visit! In my mind I’d hoped to have the apartment spotless and something yummy waiting for lunch, but reality had other ideas. These past three days I’ve been very, very tired again. I’m chalking it up to working last weekend and having a stressful week. Needless to say everything isn’t spotless and Ryan is arriving to left over pizza. I need to refill my blood pressure medication so I’ve gone without a few days – big mistake. This morning while cleaning the bathroom I had another dizzy spell, felt tingly etc. Well, Ryan’s here!!!! Gotta run!!!

I'm posting the following press release mainly as a kind of FYI - I know several readers recieve SSDI benefits. While I think that removing penalties to work is a great idea, I also believe that other issues surrounding SSDI also create obstacles to work, or to allowing people to do the most they can for themselves, whether that be full time, part time or self employment. Currently it takes two years of being on SSDI to be eligable for Medicare, coverage that is typically a bit better than Medicaid. For people with vision loss due to potentially life threatening illness, two years is too long to wait for this coverage. Many people lose everything they've worked for all their lives while they wait. After going through so much to obtain Medicare coverage, many people are reluctant to risk giving it up. It's not always just about losing benefits for an entry-level job. It's also often about health care survival. Public Relations National Federation of the Blind (410) 659-9

Do you remember in elementry school when you'd make a mistake and say, "I want a do over!" Sometimes you'd get the chance to go back, start over, and do things better. Today was one of those days that seemed like one thing after another. Half way through the morning I was wondering about the wisdom of even getting out of bed this morning. I thought that once the sale was complete, some of the uncertianty would settle down. I thought when my boss returned from maternity leave, things would get back to normal. My boss has decided not to return. It looks as though she'll be working part time or as a freelancer. That means I'm likely getting a new boss. Will they be understanding of HPS? I got some information about the health plan the new company wants to offer. It seems none of my doctors are on the plan. Do you know how long it has taken me to find the right doctors? I found out one of my friends that has cancer is likely out of remission. She'll get to spe

Since I’m about to get political – something I very selectively do on this blog so as not to distract the dialog from the issues surrounding living with HPS – I want to stress, once again, this is my personal blog. Disclaimer out of the way, Monday was a shameful day at the White House. Monday President Bush vetoed the Health and Human Services Appropriations Bill. This is the bill that provides federal funding for things such as the National Institutes of Health, Medicare, Medicaid and community health centers. For months both the House and the Senate have worked hard to reach a compromise on this bill. In fact, many Republicans and Democrats came together to support the funding increases outlined in this legislation. But, their efforts right now are shy of overriding today’s veto. I hope that good conscience prevails and enough support for an override is mustered. I’ve said this before on this blog, and I’ll say it again – were it not for the NIH there would likely be almost no clini

There once was a time when I loved flying. I loved flying anywhere. I loved being on a business trip like a grown up, staying in a hotel where someone else makes the bed, and seeing new places, even if only for a glimpse. I loved having several uninterrupted hours to sit in one place and think, or read, or write with no guilt that I should really be doing something else. Now, I hate flying. It’s gone from a pleasurable experience to a miserable one. I’m not griping about security. I truly recognize the importance of the screening process. But, nowadays it’s just such a chore, especially if you travel with a lot of medical “stuff.” I’m now resigned to the fact that I will have to ask for airport assistance from now on. I’ve always been sort of proud of my great orientation and mobility skills. I’ve always been able to figure out airports, even if I couldn’t read the gate signs, by just using a little logic and asking a few questions along the way. Now, however, it takes me a good half h

If this works (fingers crossed) you'll find a sample of one of my favorite songs from the HPS Christmas CD below. It's not great sound quality. The only way I've found to get these up are to put my digital camera up to the speaker on my computer, make a video file and then post that. This thing doesn't let me post audio files. I know the sound quality isn't great - but hey, if you like it you can get in touch with the HPS Network and buy a CD of your very own!!! HA! Grin!

At the HPS board meeting, we had two lovely lady guests who are interested in helping us improve our public relations and fundraising efforts. One owns her own public relations firm and the other is a professional fundraiser for another non-profit. She's a friend of an HPS family and would like to help out. We had a long dinner discussion with them about the Network and they asked us several questions about our goals etc. As part of the process they're helping us with, we'd like to get the feedback of those in HPSland about the following questions. I'll explain the purpose of the exercise after all the results are in - I don't want to affect your answers. You're welcome to answer if you're in any way part of the HPS community - an HPS'er, HPS sibling, parent, or even friend or supporter. You can answer by posting to the comment section, or you can e-mail me your responses at: hkdawn@yahoo.com . I've also posted these questions to the listservs, but I

For some time we've been trying to make it easier to donate to the HPS Network online. Well, I think we've done it. Google is allowing a number of not-for-profits access to several of its applications for free over the next year. One of them is Google Donate. One of our difficulties with credit card donation on the Web site was ensuring it was secure - we think we've found the most secure (not that anything online is 100 percent secure) option. Thanks to Tim from NOAH, and Matt, the resident HPS techie guru, for getting this up and running! If you'd like to make a credit card donation to the HPS Network, go to http://www.hpsnetwork.org/ !

I am soooo tired! It's going to be a long week having not had a break on the weekend, but it's all worth it. I have such a backlog of posting to do. I want to update everyone on the board meeting and get those music clips up etc. I just can't do it tonight. I'm about to fall over I'm so tired. I will say shortly that we had two very nice ladies come to part of the board meeting that may be interested in consulting with the Network on our public relations and fundraising efforts. I've been doing a lot of our PR, but working a full-time job and all of my other Network duties - I really don't have the time or resources right now to do it at the level we need. The Puerto Rico affiliate was able to recruit a professional public relations person and it's done wonders for them there. Also, the Network has never been great at fundraising. The trouble is most families affected by HPS have a lot of financial challenges for a lot of different reasons. To raise the

I don't have a lot of time to write and tell you what's happened at the baord meeting. We're about to eat dinner. Actually, besides working last night until 1:30 am and then all day today, we've pretty much grazed through the day. But, I wanted to be sure to post to get something up for today.

I'll explain this better when I get home. The short version is that I entered a contest for National Blog Posting Month. If I miss a day, I'll be disqualified. Well, today was a very long day of traveling and meetings and I'm tired. So consider this an entry with much better ones to follow when I have some time. Grin! There - did it.

Here's a scholarship opportunity for legally blind students. If anyone knows of any other such scholarships, let me know and I'll post them too. I was an NFB scholarship winner back in 1992/1993. I'll never forget that convention. I was so sick!!! I remember sitting in a session trying very hard not to just pass out then and there. My GI symptoms were very bad, and I didn't know I had Crohn's, much less HPS. I haven't been to a national NFB convention in many years, but when I did go, they were a blast and a great opportunity. NATIONAL FEDERATION OF THE BLIND2008 SCHOLARSHIP PROGRAM Each year at its national convention in July, the NFB gives a broad array of thirty scholarships to recognize achievement by blind scholars. All applicants for these scholarships: must be legally blind , and must be pursuing or planning to pursue a full-time, postsecondary course of study in a degree program at a United States' institution in the 2008 scholastic year, except tha

A recent story shared by a fellow HPS’er really brought home, once again, why people with Hermansky-Pudlak Syndrome really do need to wear medic alert identification. A few weeks ago this particular HPS’er was involved in a car accident. He’s okay now, but in the accident he was injured, bleeding, and too out of it to tell the paramedics about HPS. And, he wasn't wearing any medic alert identification. It was that thing he'd always meant to get around to doing. Thankfully, his wife happened to call on his mobile phone just as they were loading him into the ambulance, and one of the paramedics answered the phone. His wife was able to explain HPS and everything was okay. Who says God doesn’t look out for us, even when we’re not looking out for ourselves. Things could have easily, and rapidly, gone from bad to worse in this situation, and none of the medical professionals would have understood why. The bleeding disorder of HPS can vary widely. Many of us aren’t really “bad bleeder

I know, Halloween wasn’t even out of the way and all the stores already had out Christmas trees, lights, and bobbing Santa Clauses. It seems like the Christmas season gets earlier every year and thus I must confess – I hate to contribute to the problem. But, it’s all for a good cause. As you think about your holiday gift giving list, don’t forget that you can use some of your holiday shopping to benefit the HPS Network and our ongoing efforts to help find a cure. In fact, there are several ways you can shop for the cure this holiday season. The HPS Network has a Christmas CD by the Long Island group “J” available for $20. The CD is half covers, and half original tunes – all pretty much your traditional Christmas music fare. The great thing about this CD is the Network gets 100 percent of the revenue from its sale. In fact, the group “J” even donated the rights to their original songs, so should that music ever generate royalties we’d receive those as well. Think about it. We all have t

Many of the regular readers have been following the long battle to get the GINA bill passed. Some of you have been asking for an update. This was put out by the Genetic Alliance today - it's brief, but you can link through to a sample letter to send your Senator, and you can see if your Senator has signed onto the bill or not. Unfortunately, neither Pat Roberts nor San Brownback, our Kansas Senators, have signed onto the bill. What a huge disappointment to me as a Kansan. Not only do people like me need this protection, but without it I'm afraid much medical research will be hampered that could one day help not only people with HPS, but with all sorts of ailments. So, help us keep the pressure on the Senate! Encourage them to vote for GINA! From the Genetic Alliance: The Genetic Information Nondiscrimination Act, or GINA, (S.358) hasbeen reported out of committee and is under consideration by the Senate. Competing priorities have limited the Senate's action on GINAin the pa

This past Wednesday I went and had a test done to see if I’m growing bacteria in my small bowel. Although I felt like my constant diarrhea was improved (it’s only every few days now that I have to empty my ostomy bag 8 to 14 times a day instead of every single day as it had been for months.) the GI doc felt it was a good thing to check out – just to be on the safe side. I’m also having this problem where I belch all the time. I don’t know its coming and so out come these horrible belches worthy of a beer-guzzling frat party. Also I’m having some nights where I wake up and feel queasy. Apparently watery poo and gas said bacteria to Mr. GI Man. He’d only told me briefly what to expect telling me the nurse would explain the test in greater detail. Like an idiot, I didn’t even write down the name of the test. As it turns out the nurse and I played phone tag just long enough to schedule the test, but not long enough to ever have much of a conversation about the test. Needless to say, I had

Regular blog readers will remember the last few months I’ve written quite a number of blog entries about stress, and that often I sort of alluded to things going on behind the scenes that I couldn’t really talk about. Well, I can sing like a canary now! This week the official announcement was made – the magazine I work for has been sold to a new company. I can’t tell you how glad I am to have the whole thing over with, although there are still a number of details to be settled that are going to stress me out until they are actually settled. First, the good part. I’m now a veteran of four buyouts (this being the fourth) and this is the first time our magazine has been bought because someone specifically wanted us. Before, we were always sold with the rest of the company and just came as part of the deal. We’ve never really been a perfect strategic fit for our owners – we were sort of the step children that came along for the ride. But the new company wants us. They actually made an effo

Next weekend is the biggest Hermansky-Pudlak Syndrome Network board meeting of them all – the all weekend board meeting at Donna’s house in New York. I’ve posted this to both of the HPS listservs, but as I know some of you don’t belong to the listservs I thought I’d post it here. We’re looking for ideas for conference sessions. What would you all like to see? What questions are you trying to get answered? What issues are most important to you in regards to HPS? Are there any sessions from the past you want to bring back, or any sessions you feel we’ve done to death? Please feel free to post any ideas!

I’ve mentioned on this blog before that I believe it’s highly unlikely I’ll ever have children and how much that has truly broken my heart. For any newbie readers, it’s only an HPS issue indirectly. Lots of women with HPS have children (although it’s one of those reasons it’s a good idea to be tested – best not to find out the hard way that you’ve got a bleeding disorder). Doctors can safely plan for any bleeding problems if they know what could happen. For me, however, the picture is more complicated. Besides the usual problem of being 30-something and not even in a serious relationship, let alone married, I’m participating in a drug trial for an experimental medication to treat pulmonary fibrosis. One of the rules for participating in such a trial is that you don’t get pregnant. I knew this and gladly signed on anyway. After all, should I ever figure out a way to have kids, it would be nice to be around for them. But my practical nature is taking a look at the facts and finding the w