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December 2007 - Posts
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I can’t believe that in just a few days I’ll be back at NIH for my 16-month follow-up visit in the clinical trial for pirfenidone to treat the pulmonary fibrosis of HPS. I’m happy to report I think this will be a very boring trip. When it comes to HPS and pulmonary fibrosis, I’m quite happy to be a very boring patient.
Usually I start to get somewhat anxious a few weeks before time to go. The closer the trip gets, the more fixated I become on it. I start analyzing my breathing and probably become a huge hypochondriac. It’s a coping mechanism to steel myself against any bad news.
This time, however, I’m more nervous that I might be jinxing the process. I feel great. My breathing has been terrific. Even my digestive issues have been much improved since about mid October. I’m really showing up with a few minor complaints – the skin infection that won’t go away, the sore by my stoma that hasn’t completely healed in a year, and the need to have a brief chat with Dr. Merideth about our future plans.
This is going to be a very quick trip – just three days.
I feel so blessed to be a part of this trial. Of course, I don’t know if I’m getting the real pills or the placebo, but I do know that my lung function has improved since being on the medication.
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After such a long time with barely any postings, I hate to post a grumpy post, but I’m feeling very, very grumpy right now thanks to Time Warner Cable. I am not a happy customer.
As many of you know, I’ve been absent from the blogosphere because my “big” computer pretty much croaked. It’s been dying a slow death for about a year now, and although I’m typing on it currently, I know I still must buy a new computer soon. I plan to make the big purchase by Dec. 31 for tax reasons.
In an effort to set something up at least temporarily, I tried to connect Ryan’s old laptop to the high speed modem. I installed the drivers etc and nothing worked. I called the cable company’s customer service line, and for days now have been told I could expect to wait more than an hour for a customer service representative. Well, I’ve had things to do and couldn’t wait more than hour.
But, last night was a slow night. I was just watching TV, so I called and sat on hold while listening to the TV and working on Christmas ornaments for the HPS Craft Bank. Finally, I got a real life human being on the phone. She was a very nice human being and did her best to help me, but apparently Time Warner Cable has the same troubles their customers do. She kept getting disconnected from whatever she was looking at to help me. After an hour, and many of my cell phone minutes as I have phone service through the high speed modem, she concluded the modem was indeed dead. She then told me it would be at least a month, maybe more, before she could have a service representative out to my house during hours that weren’t in my work day. (I’m about to miss several days going to NIH, and I’m sure I’ll have a flurry of doctors’ appointments when I get back.)
Chatting with her, I learned that this hour-long wait in the evenings is a regular occurrence and not a result of lots of holiday gift giving trauma. She told me that if I could call in the afternoon, there would be no wait. Well, that’s because most of us are off busily working to pay those cable bills for our crappy service. Here’s an idea – if you’re business is routinely causing your customers this much trouble, then you either need to fix what’s causing so many calls, or at least hire more customer service reps for the evening hours.
The very nice lady human being was sympathetic to my angst, especially since I managed not to yell and stressed that I was not upset with her but rather “the man.” Perhaps she’s got stories she could tell about big bad Time Warner Cable too – I don’t know. I bet, however, that after working in the inner sanctum of the Time Warner customer service world fielding complaints all day, that she’d have some good stories to tell over a beer. I didn’t want to get her in trouble, so I didn’t ask. But, I did want some compensation for the cell phone minutes we were burning up.
She told me that if I scooped up the modem and took it to a “Time Warner outlet store” I could easily exchange the dead modem for a new one and be up and running in no time.
For most people this would be an easy solution, but for me – a legally blind person that can’t drive – it was not exactly an acceptable solution. When she told me where the store was, I told her that it would cost me about $30 each way in cab fare to go and get the modem, and that after spending now two hours on the problem, I didn’t feel I should have to eat the expense. She agreed and credited my bill generously, both for the cab fare and the minutes.
I was somewhat placated.
That is until today when I visited “cable hell” in person. If you (like the rest of us) are a sinner in need of some reminder of how horrible hell might actually be, you can just visit the Time Warner retail store for a little inspiration to make sure the knees of your pants are sufficiently well worn.
I went to the ATM to get the money for the cab, and then went to McDonalds to get some lunch. From there, I called a cab. An hour and a half later, the cab finally arrived. I expected that this exchange would be an easy one – that I could have the cab wait while I ran in, handed them the dead modem, got the new one, and out I’d be.
Wrong.
When I walked in the door the place was packed with other grumpy customers. It was clear I couldn’t have the cab wait. I had to go back out and pay driver and send him on his way. They were on number 52 and I was number 91. I spent another 45 minutes waiting. They did get through the numbers somewhat quickly as most people weren’t patient enough to stand around holding their various offending cable parts in hopes that one day they might actually be helped.
The people at the outlet store were amazingly friendly and cheerful despite a shop full of upset customers. I was somewhat impressed by that. I’d personally would find it rather easy to feel frustrated in such a situation and perhaps even hate my job.
Many of the unhappy customers were standing there holding HDTV cable boxes that they’d recently upgraded to, probably for the holidays. I heard one of the cable employees off-handedly tell one of these customers, “Oh yes, we’ve had all sorts of problems with these boxes. At least 50 percent of them don’t work.” Now, I don’t know if her statistics are correct, but given the high number of them being returned, there was clearly a problem. And this bit of news was indeed music to the ears of the lady standing next to me who was back at this retail outlet for her third box in six weeks.
Finally, my number was called. I handed over the old modem and in under five minutes was given a new one and sent on my way. (I, of course, had to wait another 45 minutes to be picked up by the cab.)
The new modem is all plugged in and I’m back online. The only trouble is they gave me the wrong model and there’s not a place to plug in my phone. So, now I’m back online, but I have no land line phone and I’m going to have to go back to cable hell again! Another cab trip, another entire afternoon shot.
I am not a happy customer, and Time Warner is going to hear about it.
BTW – if you need to call me, call me on my cell – hopefully Time Warner will be paying for the minutes.
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The HPS Network has received our first donation from Google donate on the Web site!!!! Actually, the donation was made in early December and for some reason there was a delay in Google reporting it to us – something we’re working on to improve. But, I’m so excited! Just a reminder, donations to the HPS Network are tax deductible as we are a 501c3 organization.
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I’m in blogging withdraw! My computer that has been dying a slow and painful death for some time has finally breathed its last. I’ve been computer shopping, which for me is like trying to buy a car.
In the meantime, the wireless connection I can occasionally get at home has been very weak. I no sooner get online and it dies out. Thus, I haven’t been blogging.
So, a very merry yet late Christmas to everyone!
I went to the Christmas Eve candle light service at my church and it was so beautiful. They turn off the lights at the end and just have the spotlight on the alter, the soloist and the Christmas tree. I wish they had left it that way throughout the service because it was so beautiful, even before the candles were lit.
I sat behind a family that seemed to have a number of young cousins visiting and they were all having a ball playing the pews, crawling under the pews, peeking over the pew at me. And I was horrible because I only encouraged them, they were so cute. I looked at their drawings and played picky boo with them. If only it weren’t incredibly inappropriate to take a picture of them during the service! It would make a neat painting with all the adults so serious and sitting up straight, and the kids just trying to survive through the service without getting in too much trouble.
I spent Christmas by myself. Before everyone has a fit, let me just say that to me, this was not a big deal. If anything, it was a blessing because I get so little time off.
I had an offer to go to Wichita, and then thought that perhaps my Dad and Ryan would fly in instead. They had mechanical problems, however, and were unable to fly dad’s plane. Everyone was so worried about me being alone – but I blissfully enjoyed some guilt-free sleeping, reading, listening to music etc. It was heavenly to me.
Hopefully the computer issue will be solved soon. I can’t tell you how I miss being online and being able to communicate with everyone.
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This is from the Kaiser Family Foundation. They have a Health Policy Report that comes out pretty regularly. Some of the numbers about what actually got approved were in here. If I weren't on deadline, I'd pull out just the stuff we're interested in - but I just can't do it right now. Sorry folks! But, for those who can't wait! Grin - Kaiser Daily Health Policy Report
Kaiser Health Disparities Report: A Weekly Look At Race, Ethnicity And Health -->
Capitol Hill Watch Congress Approves Fiscal Year 2008 Omnibus Budget Package; Bush Expected To Sign
[Dec 20, 2007]
The House on Wednesday voted 272-142 to approve a $555 billion omnibus budget package that includes the fiscal year 2008 Labor-HHS-Education appropriations bill and the 10 other unapproved FY 2008 appropriations bills, as well as $11.2 billion in emergency funds and $70 billion in additional funds for the wars in Iraq and Afghanistan, CQ Today reports (Clarke/Higa, CQ Today, 12/19). The Labor-HHS-Education section of the package includes $600.1 billion in total spending and $145.1 billion in discretionary spending (Kaiser Daily Health Policy Report, 12/19).The package in large part meets the overall spending levels of $932.8 billion requested by President Bush, who threatened to veto any proposal that exceeded his request (Clarke/Higa, CQ Today, 12/19). As a result, Democrats had to reduce the amount of overall spending they had sought by $17.5 billion and on average provided less than a 3% increase in domestic spending over FY 2007 (Cohn, CongressDaily, 12/20). For example, the package includes an increase in funds for research at NIH that does not meet the rate of inflation. However, the package also shifts billions of dollars to priorities supported by Democrats, such as health care for veterans.One hundred ninety-four Republicans and 78 Democrats voted in favor of the package. Most Democrats voted against the package because of the funds for the wars (Simon/Levey, Los Angeles Times, 12/20). The package now moves to Bush, who is expected to sign the proposal (AP/Baltimore Sun, 12/20).
Session in Review The House and Senate adjourned the first session of the 110th Congress on Wednesday, and Democratic leaders listed their accomplishments, discussed their priorities for next year and criticized Republicans for "opposition that repeatedly forced them to scale back their agenda" on health care and other issues, CongressDaily reports (Schneider/Bourge, CongressDaily, 12/20). In this session, Democrats passed legislation to expand federal funding for embryonic stem cell research. However, Bush vetoed the bill. Democrats also passed legislation to reauthorize and expand SCHIP but failed to override a presidential veto despite support from a large number of Republicans (Weisman/Kane, Washington Post, 12/20). Next year, Democrats plan to make health care a priority, according to House Speaker Nancy Pelosi (D-Calif.). "The biggest issue (in 2008) will be health care," she said (Schneider/Bourge, CongressDaily, 12/20). She cited the need to increase funds for research at NIH, begin to adopt a national electronic health record system and ensure that all U.S. residents have "universally accessible, personalized care" (Epstein, CQ Today, 12/19).Pelosi added, "It's a shame that the president did not accept our investments in (NIH and science funding) this year. I am talking about a realignment of priorities with more emphasis on customized and personalized research (on health care needs)" (Schneider/Bourge, CongressDaily, 12/20).
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I want to update you all on what has happened with the NIH budget etc. but I'm a bit swamped right now. This article just ran in the San Jose Mercury News, however, and I thought it was excellent. I'll put the link at the end. The reality is we've got to help the general public understand why the NIH is so important. There's a place for people to leave comments at the end of the article on the newspaper's Web site. I'd urge you to click through and let at least this one news outlet know why the NIH's budget is so critical. Playing politics with medical funding
By Myrl Weinberg
Article Launched: 12/18/2007 01:35:38 AM PST
At a time when many are questioning the federal government's expenditures, there is one agency that's completely worthy of appropriation - the National Institutes of Health.
Right now, millions of Americans who suffer from various diseases are depending on President Bush and congressional lawmakers to stop their partisanship and fund the agency.
The NIH, which began in 1887 as a one-room laboratory, is not the white elephant project of some parochial congressman. And NIH money certainly doesn't just sit at the agency's headquarters outside Washington. All 50 states receive substantial funding. California, for example, received $3.1 billion and 7,235 grants in 2006, and this translates directly to jobs and a strong state economy. (A complete listing of NIH funding to the 50 states can be found at www.nih.gov.)
More important, NIH's contribution to American life is both measurable and significant.
For instance, NIH researchers recently developed advanced imaging techniques to detect Alzheimer's disease and multiple sclerosis earlier - allowing doctors to spot the ailments before the onset of behavioral symptoms.
What's more, NIH laid the groundwork for today's cost-effective, at-home asthma interventions, allowing children with the chronic respiratory illness to spend time at school instead of the emergency room.
Those with diabetes can thank NIH for turning what was once a death sentence
into a manageable condition. And due to NIH, new technologies to radically improve the prevention, detection, diagnosis and treatment of cancer have been created. Today, the United States leads the world in survival rates for the four most common types of cancer.
These breakthroughs, and many others, in the fight against diseases, did not happen accidentally. They were the result of a concerted effort on the part of policy-makers. And this effort was ratified year after year by the votes of taxpayers.
Unfortunately, partisanship has stalled this year's appropriations process.
Because of a political fight over this year's level of spending, President Bush has vetoed the appropriations bill containing NIH funding. On Nov. 15, the House failed, by just two votes, to override his veto, leaving the agency without a clear budget for the fiscal year that already began in October.
Crucial efforts to increase the budget substantially cannot go forward if Congress and the president continue to quarrel.
Recently, a bipartisan effort in Congress doubled the NIH budget over five years, from $13.6 billion in 1998 to $27.1 billion in 2003. In the past fiscal year, funding stood at $28.5 billion - virtually static in real dollar terms. The Bush administration has requested just $28.6 billion for next year, and even the bill President Bush vetoed would have given the agency just $30 billion.
NIH's current budget is not small, but biomedical inflation has actually robbed it of more than 13 percent of its purchasing power since 2004. And this near-freeze in funding comes at a time when chronic diseases account for more than 75 cents of every health care dollar spent in the United States.
Cancer, heart disease, diabetes, HIV, Alzheimer's and asthma are among many chronic conditions that drive up health care costs. They are also the focus of thousands of research projects that will be cut short or may never even occur without additional investment in NIH.
For Congress to let NIH funding languish would be the epitome of penny-wise, pound-foolish. What NIH really needs is not a modest increase in funding, but a substantial new investment. A doubling of funds would bring untold dividends - dividends that could be measured in extended lives and the alleviation of suffering.
As federal programs go, NIH produces unparalleled results, largely by distributing research grants to organizations throughout the country. Through NIH funding, all 50 states now play a critical role in developing advanced medical cures.
The medical community is committed to finding treatments and cures for the diseases that threaten to overwhelm our health care system. It is high time for our political leaders to demonstrate that same commitment.
MYRL WEINBERG is the president of the National Health Council. She wrote this article for the Mercury News.
You can find the article at: http://www.mercurynews.com/opinion/ci_7749361?source=email
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The registration forms aren’t out yet. Not all the speakers are confirmed yet. But, for those that want to get a jump start on their plans for the 2008 HPS Network Family Conference, here’s a little information to help you get started.
As I’ve blogged before, the dates of the conference had to be moved this year because the hotel is undergoing renovations. The conference will be March 28-30, 2008.
The hotel room block is open if you want to go ahead and reserve your room. When the conference was in February, there weren’t a lot of groups just jumping up and down to meet in the cold of New York and the hotel has traditionally been able to be very flexible with us about rooms. In March, however, the demand for rooms is a bit greater. We had to sign a hotel contract that has something called an “attrition clause.” It’s pretty common practice, but it means that if we put, for example, 100 rooms in the room block, and our members only book 70 of them, then we’ve got to pay for the other 30 rooms if the hotel doesn’t rent them. So, we low balled our estimate and went with the same number of rooms we used last year, even though the conference typically grows 20 percent a year.
If members make their room reservations early, then we can perhaps adjust a bit.
The room rate this year is $141 a night. To make a reservation, contact the Long Island Marriott at: 1-516-794-3800. Tell them you’re with the HPS Network and need to book with the HPS Network rate.
Also, this year the conference registration fees are going up. It just isn’t avoidable. The registration fees will be $60 per adult and $30 per child. Families with more than two children will pay $60 for all children.
Most of us are tight on cash, and any rise in the price is not great news. However, having worked behind-the-scenes on this conference I can tell you that $60 per person doesn’t even begin to cover costs if we charged attendees actual costs. The registration fee includes meals from Friday night to Sunday lunch (if you show up at meal times). It also includes snacks in the hospitality suite. And, it includes access to all the conference public sessions and all the speakers and the party on Saturday night. HPS Network fundraisers help to offset the costs as much as possible. (Thanks to all of our fundraisers out there!)
We’ll be getting the registration forms out sometime after the first of the year.
I just wanted to give you guys a head’s up!
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Some time ago I blogged about the National Federation of the Blind's Science Youth Slam. One of my friends was one of the adults, and one of the kids I know from Camp Fire got to participate (and is in this video). I thought the video clip might be inspiring to blind/visually impaired kids that are dealing with issues in science class, or who really would like to follow a career into a scientific or mathematical field. It's the sort of thing I would have never thought about as a kid. And, you'll also notice, there are several kids participating that have albinism! Grin!
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I am sorry to report that the GINA bill to prohibit genetic discrimination was not included in the latest omnibus bill and this, as far as I can tell anyway, seems to be dead for the year. This means that next year, once again, we'll have to lobby for GINA. So close, and yet so far. I am waiting on news from the Coalition for Genetic Fairness to find out what the next steps will be. I just thought you'd want to know. I can't help but feel like GINA is the butt of some political game being played - why else would senators who have time and time again backed GINA, voted for GINA, suddenly turn their backs on it? Someone, or several someones, are not being straight up about their stand. I can't help but feel disappointed.
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Gee, what do you know, it really is possible to make a action/horror flick and leave people with albinism out of it. Who knew? Grin – okay, enough of the sarcasm. Bravo to Will Smith and creators of the film “I Am Legend” for choosing to leave people with albinism out of the mix and instead feature “zombies.”
The last time this story was made into a movie, the zombies apparently had albinism. It’s so nice to have an example of someone in Hollywood trying to do the right thing.
Check out Dr. Reece’s blog at: http://skinema.blogs.com/skinema_dermatology_in_th/2007/12/albinos-mia-in.html
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You can not discriminate against me because I might develop a given health problem. You can not use my genes against me. It isn't right, but apparently there are a few senators having a tough time with the concept. Here's the latest GINA (Genetic Non-Discrimination Act) update.
The House is working this weekend to get an omnibus bill together for Monday. Your calls have helped – but efforts to block it have been stepped up with another hold on the bill: Senator McConnellH.R. 493, the Genetic Information Nondiscrimination Act (GINA) Summary: The Genetic Information Nondiscrimination Act (GINA) would prohibit insurers and employers from discriminating based solely on a person’s genetic information. Title I protects an individual from insurance discrimination. Title I applies to employer-sponsored group health plans, health insurance issuers in the group and individual markets, Medigap insurance, and state and local non-federal governmental plans.Title II prohibits the use of genetic information in employment decisions, such as hiring, firing, job assignments, and promotions. This prohibition extends to employers, unions, employment agencies, and labor-management training programs.Status:
Passed in the House of Representatives on April 25, 2007 by a vote of 420-3.
The bill has 224 cosponsors, including 95 Republicans.
Passed in the Senate in the 108th and 109th Congresses by votes of 95-0 and 98-0 respectively.
McConnell voted for GINA both times.
Coburn voted for GINA in the 109th. He was not in the Senate in the 108th. Coburn now has a hold on the bill, so we cannot get a vote in the Senate.
The President has issued 3 Statement of Administration Policies in support of the bill.
The bill also enjoys the support of 200+ organizations.
ACTION: Call Senator McConnell and tell him you support putting GINA in the Omnibus: Tel: (202) 224-2541 Fax: (202) 224-2499 Email: http://mcconnell.senate.gov/contact_form.cfm <http://mcconnell.senate.gov/contact_form.cfm>
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Some of you have e-mailed to ask how I make the painted eggs. So, thought I’d reply to everyone at once and just post it here. It’s pretty easy. I cheat and buy paper mache eggs at the craft store. You can get them in all sizes ranging from little ones to huge ones. They typically range in price from 30 cents to a dollar.
I make up my own designs and sketch them onto the egg. Then, I paint the egg with wood sealer to make them sturdier and so the paper doesn’t absorb so much paint that the colors aren’t bright. Next I paint the eggs. When I’m finished and they’re quite dry, I paint several coats of varnish over the finished product to make it shiny and to protect it further.
That’s it! Hopefully I’ll have the Mrs. Clause egg done shortly. They do take a lot of time.
You can do the exact same thing with wooden eggs.
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1 pkg. frozen hash browns (the kind with the onions and peppers in already)
1 16 oz container of sour cream
1 pkg. cream cheese
1/3 of a 32 oz pkg. of Velveeta
2 cups of shredded cheese (any kind you like – even mix and match – I use the pre-shredded Mexican blend from the grocery)
2 cups finely chopped celery
2 cups crushed Special K cereal
Pre-heat the oven to 350 degrees. Thaw the hash browns just enough that you can break up the big frozen chunks so that they can mix with other ingredients. (They do not need to be fully thawed.) In a large bowl, mix the hash browns and sour cream. Add in the cream cheese and Velveeta by breaking them up into small cubes, and then stirring into the mixture. Add in the celery and shredded cheese. In a 13 in. x 9 in. pan, spread out the mixture evenly. Take the crushed up cereal and spread over the top. Bake at 350 degrees for an hour.
This recipe is fattening, but always a hit at potluck dinners and very kid friendly.
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I posted the video clip about the Braille Graffiti project in Portland, Oregon in the midst of the ice storm. While I was able to get the clip up, I wasn’t able to explain why I posted it.
To be honest, I was just curious about what all of you, especially those that are also blind/visually impaired, thought of the project.
As some of you know, I’m a big fan of Current TV. Current broadcasts what they term “pods” – short, independently-produced video clips about a certain topic. They’re sort of like mini documentaries.
The other night I was watching and along came this pod about the Braille Graffiti public art project. I wasn’t sure what to make of it.
My first reaction, fair or not, was suspicion. I still have a lot of questions and perhaps one day Scott, the artist, will find us here and be able to answer some of them. Suspicion probably isn’t the fair response to have – but it’s been learned after watching too many people with little understanding of blindness or the blind community try to “help those poor blind people” and in the process sometimes actually do a great deal of damage. What was this guy’s agenda? Had he involved blind people in the project? Who is this Scott guy? Why is he interested in Braille? What does he know about it?
My second response was perhaps as shameful as my automatic suspicion and skepticism. While I would never advocate defacing private or public property, there was something mildly appealing about Braille being associated with something young, hip and definitely not nerdy.
The Current pod interviewed two blind people who were not impressed with the project, but they were both older and I doubt that, were they sighted, they’d be much impressed with print graffiti either. Just the term “graffiti” seemed to turn them off for all the reasons it sort of turned me on.
It was much like when I was in high school and my vision teacher told me a story about a former student of hers that had been arrested for selling drugs out of his brailler. He’d tuck the contraband up into the inside of the machine and worked as a dope dealer during his lunch hour.
Don’t get me wrong. I’m not pro dope dealer. I don’t think it was cool that he was pushing drugs. Yet, somehow, thinking about some kid using his brailler for such a purpose made blindness seem somehow more normal. We weren’t just a bunch of fragile goodie-two-shoes who could never possibly do anything wrong because somehow we just weren’t capable of it. If blind people are capable of achieving the best in life, of becoming lawyers and business people, then surely we must be capable of achieving the worst in life too – even being a dope dealer.
If I was well behaved and pretty much a “good girl” it was because I actually chose to be, not because I wasn’t capable of doing anything different. Somehow, I really liked that idea.
There are a lot of obstacles to kids learning Braille- among them the “cool factor.” So, if it’s not doing a lot of property damage, why not?
Yet, part of what would make Braille graffiti artistic would be the phrases or statements that it would make. I wonder why there’s not a print translation next to each bit of Braille? Also, I found it interesting that the video clips highlighting the “art” weren’t audio-described so that a blind person could access it? Did the artist think of this? Just wonder…..
Anyone else have any thoughts?
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