Living on the frontlines

Notice: Not for the squeamish The past three days have been very frustrating. I’ve been so fatigued and having a lot of diarrhea. Today I have these sores in my mouth on my tongue and on the inside of my right cheek going down to the gum. This evening the runs are back too. I think I find fatigue the most frustrating symptom to deal with and the one that causes me the most emotional distress. Physical maladies and pain are no picnic, don’t get me wrong – but at least for me, they don’t evoke the same emotional fallout that just plain being so tired does. Friday I did get a lot done, even though I felt tired all day. Saturday I accomplished nothing. No housework. No HPS work. Nothing. I was in the bathroom every 30 minutes to an hour. By evening the Lomodel had taken effect and the runs were slowed down, but I felt wiped out by the day. I also felt dehydrated. Dehydration is a funny thing. At first you might feel thirsty, but once you get past that, at least for me, I don’t desire anyth

It's been a while since we've had an update. I think HPS testing slows down over the holidays. Most people are enjoying the season and don't want to be tested. We did have a new member join us this week - so that puts us at 32 more to go for the Hundred People Search this year. We were ahead of schedule, but now we're running behind. In recent weeks I've met a few HPS'ers on Facebook that are not registered with the Network. Even if you don't want to be involved, it is critically important that you sign up for the patient registry. It's totally private. We have to prove to the research world that we are out here and we need help. We also can't tell you about any new developments or trials that might benefit you if we don't know who you are. Please, if you're out there and you haven't registered with the HPS Network, stand up with us and be counted.

I feel like I’ve been neglecting the blog. I’ve been very busy working on HPS projects and so it’s distracted me from self reflection. I have this growing stack of grown-up things to do on my desk that I’ve been avoiding. I dread these sorts of things that are really just part of life. Tomorrow I need to take a good chunk of the day and make phone calls, one after the other. I’ll probably spend most of the day in voice mail hell. First, there’s the strange letter I got from the Kansas Department of Revenue. It’s on the right stationary etc. but it seems so strange that I can’t help but wonder if it’s a scam – thus the need to call. Essentially, the letter tells me that my 2008 taxes have been “adjusted” and I was found not to be eligible for the food sales tax deduction. I have someone do my taxes, but we go over the forms very carefully together. In 2008 I took the standard deduction. I don’t remember, nor have I ever heard of, this food sales tax thing. Why would they be telling this

I suspect I'm not the only one that has wondered what happens to people with disabilities in times of natural disasters such as what has happened in Haiti. We'd be an easy population to ignore, forget and leave behind. Here's a press release that was posted to the Genetic Alliance online group. While it doesn't say much about what's happening right now, it is nice to know the thought occurred to someone. Perhaps as the ground settled, there will be special ways those of us with disabilities can pitch in to help. If I hear about them, I'll pass them along. I also hope that efforts are not limited to only those with mobility impairments. I suspect, for example, that the population with albinism is in dire need of sunscreen as so many people are afraid to stay inside for fear more buildings will collapse. USAID – Response to Disability Issues in the Haiti Response and Recovery Efforts “Disasters are always inclusive. Response and recovery are not, unless we plan fo

Oh how I'd love to have a good vent about this - but I'm so swamped with trying to work with Donna and the office on the HPS Conference, that I just haven't had the mental energy to tackle it. This is another summary from the American Thoracic Society's newsletter. It's very brief. I chose it becasue they write a nice summary. Keep in mind it is a summary though. Health Care Reform - What Next? While House and Senate Democratic leaders are still scrambling to make sense of Sen-Elect Brown's victory in Massachusetts, it is clear that the election results will have a significant impact on the health reform legislation. Prior to the special election on Massachusetts, Congress appeared headed towards tweaking the Senate health reform bill and attempting to pass the bill before President Obama's State of the Union address. Now both House and Senate Democratic leaders are appear to have abandoned the Senate bill and are considering a number of other options, rangi

I seem to have the blaas. Thankfully there’s nothing major going on with the health front. At the same time, I seem to have this fatigue that won’t go away. I suspect it’s emotional, however, I have no real reason to be depressed. My sleep patterns are all off again, which is frustrating. My stomach isn’t crampy, but I do have to get up several times in the night to go to the bathroom. Why is it I seem to sleep best in the mid morning?

This is an independent film I watched a few weeks ago while recovering from one of my headaches. It was released in 2009 and is rated PG – 13. It’s about a divorcee from Palestine and her son who immigrate to the United States in hopes of a better life. Like so many that migrate, the United States wasn’t everything they expected, nor was life as easy as they’d hoped – but in the end they manage to settle in and start to build relationships in their newfound home. The film moves a little slow in places. It isn’t an action film for sure. It does, however, almost have a documentary-like quality to it in the way it follows the family and their emotions. There is one scene in particular that reminded me much of my own family’s migration to the United States. The mother has carefully hidden her life savings in the baggage to protect it. Unfortunately, she hides it in the wrong place and it disappears. When one of my great great grandfathers and his family came to the United States from Engla

These are some more photos from New Years. I'm very ashamed to say I can't remember this younger guy's name. Karen and Echo had a cosy fire in the fire place for the jam session, and this guy took it on as his job for the evening to tend the fire. He kept a keen eye on it for sure!

This is a movie I remember my family renting when I was in high school, and it was a delight to watch it again. It’s about the last Emperor of China, who ascended the throne at the tender age of three. As history would have it, China was in the midst of undergoing great political change. In the midst of it was this poor little last Emperor of China who, it seems, never really had control of his own life. The movie follows his life story from his crowning at three, to his spoiled upbringing inside the walls of the Forbidden City, to his forced abdication, to his role in Manchuria with the Japanese during the Second World War, to finally his existence as an average Chinese citizen. This is a movie for adults, although with the exception of a sex scene it isn’t too family unfriendly. The content, however, is historical and would probably be of little interest to younger viewers. I give it four and a half out of five spoons.

I'm copying this information from www.igive.com . Anyone who could pass this along and help us we'd greatly appreciate it. Hi Heather, Last month, we tried something new to help Hermansky-Pudlak Syndrome Network and all the causes listed at iGive. It worked better thanwe ever expected. We donated over $5,000 in less than 24 hours, so we're going to try it again!It requires your participation, but it is free and definitely easy.For each person who joins iGive using the special link below and does just one qualified web search on our site between now and noon Thursday, we'll give Hermansky-Pudlak Syndrome Network a dollar. 5,000 new members, $5,000. No purchase necessary. That's 5,000 new members for all causes, not just yours, so it's a bit of race.Of course, if these new members search more (or buy something at an iGive store) they'll earn even more money for Hermansky-Pudlak Syndrome Network. Right now, we're donating a special $.02 per search and

Thanks for all the lovely notes about the painting. I do plan to start trying to sell more of my artwork. It feels funny to sell something you just love doing so much. This painting is now sold. In another week or two I should have another one finished. I'm working on two right now. One is a watercolor. It's a picture of the front stoop of an old house I just thought was interesting looking. The other is another landscape, but this time not in the winter. It's at hay making time and it's a very midwestern looking farm scene. They are both smaller than this painting.

It's getting to be that time of year. Those of us in HPSland are anxiously counting down the days until our next conference. I'm going to start posting "conference teasers" in hopes of enticing some of you to join us. In the meantime, the registration forms have been mailed out. If you haven't recieved one, they should be available on the Web site any time. Matt is working on that as I type. This year's theme is "Believe in your Dreams!" The dates are: March 19 - 21st. Check out the HPS Network Web site at www.hpsnetwork.org .

Today was a frustrating day. My computer was experiencing “technical difficulties.” I still don’t know why, or whether any of the tricks I tried actually fixed anything, or whether these difficulties will return. As Chris put it, these computers are like people. They have personalities of their own. So true – and in fact I was experiencing the cranky side of my computer, nick named “Baby” this morning. Baby was having a tantrum this morning and Mommy wasn’t happy at all. What is it about human beings that we feel the need to attribute human qualities to non-sentient objects? We’ve done it since the cave days when some humans thought Gods lived in the trees or the rocks or the camp fire. Are we so different, so progressed? I’m convinced there’s somehow intention behind it when this machine crashes. Does it somehow make it easier for us to understand malfunction if we can attribute feeling to it? I wonder, do the technically gifted, more versed in the malfunctions of machines, feel the s

These are photos from the jam session at Echo and Karen's house at New Year's Eve. The big black dog is Ashley, a long lost friend as much as any of the human guests. Ashley is my friend Tina's retired guide dog. The family that has him now brought him to the party to see everyone. Of course, everyone that knows Tina knew Ashley. Yes, that's Ashley, as in "he" - think Gone with the Wind . "Ashley, I always loved you.....Ashley....." We alwasy joked among my girlfriends that Ashley was the token male in our group. He's quite a character. Some of his more memorable moments: Ashley always thought he was a lap dog, even though he probably weighs 70 pounds. If you sat on the floor, he'd come running over to literally sit in your lap! One time while Tina was cantoring at Mass, Ashley proceeded to eat the berries off of the Christmas decorations on the alter. The whole church didn't know what to do - to stop the Mass and tell her or to let

The mountian in the distance here - behind the tree - is Cheyenne Mountian - home to NORAD. In the big bad cold war days, this was the hub where the nuclear war would have been managed from - where the orders would come to launch the nukes. I'm sure they've got all sorts of new missions now. If you're a child of the 80s and you remember the movie "War Games" this is where the computer lived......they used to give tours until 9/11. It's a shame. I'd love to take a tour! These are more photos of Garden of the Gods. You might see some winshield schmutz here and there as I was taking them from the car.

We interrupt this blog for a completely self-serving advertisement. Usually I donate all the funds from any artwork I sell to the HPS Network. This time, however, I'm selling some artwork for me - however its for the Network indirectly. Some of us are planning to stay an extta week in New York and thus if I sell this painting, the funds are going to my New York or Bust coffee can. The asking price is $80. This is a 16 by 20 acrylic. The title has a double meaning. It's a winter scene yes, but it's also what I did while I was getting over a bad cold in December/January. Sometimes when you feel bad it's hard to do higher thinking things, like writing a grant. But you can do mechanical things, like paint. When I couldn't seem to focus on the other HPS things I needed to do, I worked on this. I don't do many sunsets, so my technique there is, well, a little lacking. But hey, it's art. It isn't supposed to be perfect. I wish I had a better way to photograph

This is an area near Colorado Springs. We just passed through on our way to a German restaurant, so I didn't get to spend a lot of time taking photos. As you can tell, it was getting dark too. The area is known for these red rock formations. It's called Garden of the Gods.

The deadline for this one has passed, but it requires a lot of planning, so if you're a junior in high school now, and you might be interested in this opportunity, I'd put it on your calendar now. The Jewish Guild for the Blind has created an annual scholarship program for college bound high school students who are legally blind . Applications will be accepted from students at the beginning of their senior year, with recipients selected and scholarships awarded later in the year. The GuildScholar Program will award 12 to 16 scholarships of up to $15,000 each. Calendar Application and supporting documents must be at The Guild by September 15th (at the beginning of the senior year). Scholarship recipients announced by mid December semester break. Scholarships will be awarded by June 15th. Award Criteria 1. Completion of the GuildScholar Online Application .2. Proof of legal blindness: Verification should be in the form of a statement from a state rehabilitation agency, an ophthal

Here's another item that came across my desk I thought might be of interest to some of you. American Council of the Blind 2010 Scholarship Application Program Dear applicant, thank you for applying to the American Council of the Blind Scholarship program. Please take a few moments to review the critical application instructions that follow prior to proceeding to the online application. Doing so will assure that you have organized yourself in such a manner that you have submitted all required documentation in a timely manner. Please copy and save this instruction page prior to proceeding so that you may reference them as needed. Scholarship application instructions: The American Council of the Blind scholarship application process must be completed online. Only approved supplements will be accepted by regular mail. See the mailing address below for submission of the supporting documents. Incomplete forms will not be processed and considered for review. Please do not leave any quest

Disclaimer – to those who don’t live this stuff every day, much of this information will fall into the “too much information” or TMI category. If that bugs you, skip this one. I’ve been doing a lousy job of updating my health stuff on the blog and thus need to do some catching up. As regulars know, I got a nasty sinus infection over Christmas, felt good at New Years, and then got another horrible cough/cold right after New Years. I’m not sure if they were related. The last two days are the first days since the first of the year that I haven’t been coughing a lot. I’m still coughing, but only every now and then. My throat also stopped hurting, and I haven’t had a fever in four days. I had been running an on and off low-grade fever. The past two days I’ve had profound fatigue – the kind where you fall asleep at your computer! I was almost relieved when my period started and I had something to contribute it to that will go away in a few days. Since I had the Murina IUD put in, my HPS fem

The following update is from the American Thoracic Society newsletter. If I get a chance, I might comment later. For now, I know its hard to figure out what exactly is going on with this issue. I for one, am very confused about the current state of the bill, what's in and what's out. Thus, I'm not posting this as a pro or a con - it's just a nice summary of what's going on. Congressional Leaders Close to Deal on Health Reform Bill Following Senate passage of healthcare reform legislation on December 24, House and Senate leaders are negotiating between each chamber and with the President to produce final legislation. Instead of a formal House-Senate conference on the bill, the leadership and chairs of the relevant House and Senate committees are meeting and working informally to produce a final bill, a process known as "ping-pong." Late yesterday, an agreement with Labor leaders was forged on one of the "pay for" mechanisms in the bill, the tax o

Years ago a work friend of mine went on a mission trip to Haiti. While there they did some work at an orphanage in the capital city. She came home with photos to show me of a little three-year-old girl there with albinism. The girl had been abandoned by her family and the orphanage knew nothing about albinism. The little girl spent her days in the sun with no hat and no sun glasses. We gathered information to send to the orphanage workers along with some hats and sunscreen. We sent them with the next mission group to go to Haiti from my friend’s church. I remember at the time wishing I could scoop this little girl up and give her a safe home with someone who would understand. I wasn’t, of course, in any position to adopt – I’m not even sure if it would have been possible. Over the years I’ve thought about that little girl when I think about how I wish I could have a family. Her photo is emblazoned in my brain. When I think of her I sent a prayer up to God to watch over her. It’s all I

Heart disease has the little red dress. Breast cancer has the pink ribbon. Everyone knows they should get a colonoscopy after a certian age, or get their prostate checked. Lots of people know their good and bad colesterol numbers. But how many people know anything about lung health? A gathering of international lung health organizations is promoting 2010 as the Year of the Lung. They are hoping to elevate the status of lung disease in the public as well as the medical community. I have to say, as someone who has lung disease (pulmonary fibrosis) - the general public is very unaware, and very unsympathetic, when it comes to lungs. Too often lung disease is viewed as being "your fault." It's an unintended side effect of great non-smoking campaigns. I'll be posting more about the Year of the Lung as things develop. Here's the initial declaration: 2010: The Year of the Lung Declaration 6 December 2009, Cancún, Mexico Download the 2010: Year of the Lung Declaration We

I have to confess, the artsy-fartsy part of me really likes the line in this photo.

This photo of the campus chapel was taken from a distance. I'm normally not a huge fan of modern architecture. I like the classical look. Yet, every since I was a kid living on the Air Force Academy when my dad was stationed there, I loved this chapel. I think the spires look like plane propellors (sp?). I don't know if that's intentional, or just a creation of my mind.

I didn't post this to any of the HPS groups etc. Most people with albinism can see well enough to match clothing or see money. I do have some blog readers, however, who are blind but who don't have HPS. So, this is for you guys! It's in the New York City area. SAVE THE DATE Friday, January 22, 2010 The Computer Center for Visually Impaired People (CCVIP) at Baruch College Invites You to a Technology Demonstration on Identification Devices Time: 1:00-3:00pm Where: Baruch College , 151 East 25th Street (between Lexington and 3rd Avenues, on the North side of 25th Street ), Room 1220 What: Have you ever wondered what color that shirt you were holding was? Is that a can of tomato soup or garbanzo beans? Is that a five dollar bill or a single? Join us as we look at the devices that have been designed to assist you in identifying these items and more. We will be looking at the ID Mate, the Colorino Color identifier, the Money Talks money identifier and labeling systems like

Here's another photo taken out of the car window on the Air Force Academy....

This is a photo taken on the Air Force Academy out the car window.

SAVE THE DATE REMINDER April 9, 2010 Photo of Lynnette Tatum at the 2009 Conference Workshop What: “Navigating Change, Discovering Solutions” 3rd Annual Conference on Employment and Visual Impairment Where: Baruch College Conference Center 55 Lexington Avenue (at 24th Street ) Time: 9:00 AM – 4:00 PM Registration: Online and phone starting in February Cost: Free admission including lunch and refreshments Sponsored by: Computer Center for Visually Impaired People at Baruch College & Baruch’s School of Public Affairs Mark your calendar!!!!! April 9, 2010

I took some pics out the car window, so excuse the occassional smutz.

After celebrating New Year’s at Echo and Karen’s, I spent the first day of the year being lazy with my friends Tina J, Meghan and Shannon. They were in town to attend the jam session at Echo’s and decided to crash at my place rather than risk driving home on the icy roads with a bunch of drunk people. We spent New Year’s Day just being lazy and we watched the film, “The Nanny Diaries.” I’d give this film four and a half spoons out of five on the Heather movie spoon system. It was a very cute, lighthearted comedy without much in the way of smut or other things that could ruin the movie for general family viewing. There is the occasional swear word, but the offender is scolded, if that matters to you. The story is about a recent college grad looking for that first “real job.” The pressure of the job hunt gets to her and she realizes she’s just not ready for it. So, to buy some time, she takes on a job she thinks is going to be easy – being a nanny to a four-year-old boy. It turns out to

Here's my Dad opening his Christmas gift from me - a painting of a T38, one of the planes he flew in the Air Force. In the top photo he's showing off how, when they flew in formation, he would line his wing up with the American star on the side of the plane next to him. He was showing me this because I wasn't very happy with the way the wings turned out. It looks as though the plane has no wings from this vantage point, but that's the way it looked. Still, it bugged me while painting it. Dad assures me the wings were incredibly thin and indeed seemed to disappear if you looked at it from the right angle at the side. Either he's right, or incredibly gracious.

Some time ago I think I posted something about Virginia Tech University and their work to develop technology that would allow the blind to drive. This month the Braille Monitor has an updated story. They are hoping to have a prototype on the road in 2011 that can be driven fromo Virgina Tech to the NFB's National Conference. Pretty cool! Here's a summary of the project as posted on the NFB's Web site. THE NATIONAL FEDERATION OF THE BLIND BLIND DRIVER CHALLENGE Driving Independence and Innovation through Imagination “We choose to go to the moon. We choose to go to the moon in this decade and do the other things, not because they are easy, but because they are hard, because that goal will serve to organize and measure the best of our energies and skills, because that challenge is one that we are willing to accept, one we are unwilling to postpone, and one which we intend to win, and the others, too.” These words spoken by President John F. Kennedy in the fall of 1962 served a

This is my step sister Danielle. Here she's opening Christmas presents. I like the top photo best as she's got such a big smile on her face.

Here's an article that appeared in one of the local Long Island papers about the Christmas concert. HPS Network Concert With a Cause Written by Dagmar Fors Karppi Friday, 08 January 2010 00:00 The HPS Network held their 8th Annual Benefit Concert at the Oyster Bay High School Performing Arts Center twice this season. The first was held Friday evening on Dec. 4, followed by a Sunday concert at 3 p.m. After the Sunday concert JoAnn Criblez and her brother John DiGennaro of the group J, performed at the Derby-Hall Bandstand for the Holidays in Oyster Bay program. Seated in the rear of the packed auditorium on Friday was OB-EN School District Social Worker Matthew Brown who said, “What a great event this is! What a great night!” To read more: http://www.antonnews.com/oysterbayenterprisepilot/news/5173-hps-network-concert-with-a-cause.html