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March 2008 - Posts
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Do you use American Printing House for the Blind products? Than you might want to try to earn a little cash by entering this essay contest. Check it out, but the deadline is coming up fast - April 1st. Printing House for Blind seeks essays for contest
JEFFERSON
The American Printing House for the Blind is conducting an essay contest and inviting the public to tell how its products have made an impact on their lives. The contest is open to students with a visual impairment who are enrolled in grades 3-12 for the 2007-08 academic year, adult consumers of printing house products and teachers of the visually impaired, rehabilitation counselors, and other professionals in the field of blindness.
First-place winners in the adult categories and students in grades 9-12 will be able to choose either a Braille+ Mobile Manager or a $1,000 printing house gift certificate. Students in grades 3-8 who place first can opt for a Manual Perkins Brailler or a $750 gift certificate.
The deadline for entry is April 1. The entry form, including the official topic and guidelines for the essay, is posted at www.aph.org/essay.html. For print or Braille copies of the form, contact Becky Snider at (800) 223-1839 or rsnider@aph.org.
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I haven’t posted in days. Regulars know this is highly unusual. I’m addicted to self expression and it just about kills me not to be able to journal, or blog. But these past few days I’ve been so under the weather the building could have caught fire and I wouldn’t have cared in the least. I just would have rolled over and enjoyed the heat since I had a bad case of chills.
Last week was the week from Hell. It really put a damper on Easter. I feel like all the things I love about Easter, all the spiritual preparation etc. just sort of fell by the wayside.
As I had blogged before, we were very behind at work. I had stayed home Monday last week (after sleeping all weekend) thinking that I could sleep off this bug. It seemed to be viral and not bacterial and I really hated to waste the money and the time off work to be told to drink more orange juice and get plenty of rest.
So, Tuesday and Wednesday I struggled through my day feeling horrible. I mean pretty darn horrible, which doesn’t help on a deadline. Nothing like trying to read edits and being unable to focus on the page because your nystagmus is all over the place. Mine tends to get worse when I don’t feel well or am very tired.
Thursday I felt very bad, but I went in. I felt like I had to go in. As the day went on I noticed I was getting pains in my upper back every time I took a breath in – okay, that’s enough of that. The last thing I need is some respiratory infection.
I called my new doctor but couldn’t be seen until Monday – even if I saw another doctor. Well, that wasn’t going to work, and the ER seemed like overkill – so I asked my boss about the urgent care place doc-in-the-box where she takes her kids. I must have looked really horrible because she said she’d drive me over there right away. They sent me home and my boss even drove me home.
I tried to work at home the next day, but I couldn’t stay awake. I still felt as though I’d been hit by a truck. It’s been a long time since I’ve had a silly cold last that long – nearly two weeks.
And, of course, being an HPS’er adds a whole other layer to colds, especially when they go to your lungs. You can’t help but wonder what’s going on in there? Could this be the trigger that could take my fibrosis from stable to off and running? Is this stupid cold creating more scar tissue? I can’t help it. These thoughts run through my mind, especially when it hurts to breathe.
Needless to say, I’m way behind on personal business. I owe about a zillion e-mails and then there’s conference. Oh boy, I’m so behind on that. Nothing like winging it.
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It is truly frustrating how many people with Hermansky-Pudlak Syndrome go undiagnosed. Later this year the HPS Network is planning a major outreach effort in Florida. While HPS is not “just a Puerto Rican thing” it is more common in Puerto Rican communities – and Florida has a lot of these communities.
According to the U.S. Census Bureau, there are nearly 800,000 people of Puerto Rican background in Florida. If you stop to consider that HPS typically occurs in one out of every 2,000 odd births in this population – there are likely several hundred HPS’ers walking around in Florida completely unaware they have the syndrome. So, we’re going to try to find them.
Sometime this summer the HPS Network is hoping to host a one-day mini HPS Conference in Orlando. To maximize the efforts of our doctors from the NIH that would come to speak, however, we are trying to build relationships with local hospitals and hopefully do some educational sessions at area medical centers for medical staff.
Elsie and Debbie are working on helping us organize the conference.
And this week Hilda went to Orlando to start knocking on doors and building bridges for the medical outreach effort. Hilda is one of our unsung heroes. We are so blessed to have her. She’s a retired nurse from the NIH. When she was working at the NIH she worked with HPS patients in the natural history study as well as the first Pirfenidone drug trial. Now that she’s retired, I think she may work even more hours than she did while she was working!
Every time I’m up at the NIH for my drug trial follow up appointments there’s Hilda. She’s often translating for someone from Puerto Rico who doesn’t speak English. She’s been known to use her vacation time back at home with her family in Puerto Rico visiting patients and knocking on doors trying to help outreach.
And that’s what she’s doing this week in Florida as well. Monday she met with Debbie and Elsie, and then yesterday Elsie and Hilda pounded the pavement visiting hospitals and making friends. Debbie provides child care for her granddaughter so she couldn’t go along.
I’ll let you know when we have dates for the Orlando conference. We’re arranging the medical education components first because the doctors are likely to be less flexible than the patients. Stay tuned.
And thanks to Hilda, Elsie and Debbie!
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As my friend Sheena would say, I need a little cheese to go with my whine. I’m in the mood for a good whine. Ever want to cut your nose off from the rest of your face? How is it possible that gallons of snot can come from a single person’s head? Is it possible there’s an invisible structure squeezing my head? And how on earth did I manage to swallow all this glass?
That’s how I feel. Tylenol does improve things, and the sinuses do dry up for a few hours at a time – although my nose now looks like a Rudolf imitation and it occasionally bleeds from the chapping. Just what I need, the occasional drips of blood to further distract my day. My joints ache, for which the Tylenol doesn’t help. I have to pee constantly and yet can’t seem to drink enough. But these pesky magazine deadlines are nipping at my heels.
I’m tired, so tired. I’m so tired I slept through my alarm this morning and then fell asleep standing at the telephone poll waiting on the bus. Honest. I fell asleep standing up, my purse dropped to the ground where anyone could have run off with it. The bus driver had to honk to wake me up.
I arrived at work to discover one of our features has fallen through, completely, just two days before press. Do you know how hard I’ve worked to try to have everything done on time, even though I’ve had extra work to do, so that I could get it finished and leave for conference with everything under control? This feature had nothing to do with me, isn’t my responsibility but now I have the added stress of trying to pull together a replacement story in TWO DAYS. Not so bad if I were doing a newspaper type story – but this is different. Oh yeah, and that’s on top of the freelance story I took on to help pay for conference because I’m so bloody underpaid. I’m not happy.
But apparently this single girl has nothing better to do in the evenings than pull a story out of thin air. I don’t have kids you know – just a conference coming up in a week that I’m not ready for. I haven’t even written my presentation yet!
But as much as I have to whine about, it’s so minor compared with what’s going on in the lives of other HPS’ers. It some ways that makes it even more annoying. If I’m going to be slowed up by illness, it should be a whopper – some major pneumonia or colitis or low hemoglobin – something worthy of all this trouble. Who has time for a run-of-the-mill, everyday, completely normal cold?
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 Team HPS raised more than $2,500 for HPS - the total isn't completely in yet.
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 While the Falcons were playing hockey, in Greensboro team HPS was walking in The Human Race. I especially want to point out the woman sitting next to Karen at the table. This is Karen Bailey. Karen Bailey spent most of the last year in the hospital after contracting MRSA. She's made a miracle recovery after many didn't expect her to make it. Although she's now using a wheel chair, Karen really wanted to help raise money for HPS. How's that for touching? She raised over $1,000 for HPS and did the race in her wheel chair. Holly, Karen's daughter, also raised more than $1,000 for HPS. Way to go gang!
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 Pictured here is the HPS Hockey gang, mius Christina's dad. Pictured here are: Rebecca, Veronica, Christina (one of our newer little HPS'ers), her mom Sarah and Carmen. A special thanks to the Springfield Falcons for donating a percentage of their ticket sales to HPS!!!!!
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 I hear this was one of the more popular raffle items - grin!
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 Here are the three musketeers from Boston - Rebecca, Veronica and Carmen.
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 As many of you know, this was quite the fundraiser weekend. We had a number of HPS fundraisers underway this weekend. I'm waiting on info from all of them to flow in. Here are some pictures from the fundraiser in Springfield, Mass. organized by the McGillicuddy family. Here, Carmen, Rebecca and Veronica, HPS'ers all, are working the information table.
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Well, there’s a weekend that never was – and today I’m home from work too (although I’m about to get online and try to work from home.) I’ve got a cold. It’s just a run-of-the-mill virus I think, but with all my other medical crap, the last thing I need is another reason to miss work.
But, I’ve been running a fever of 102 all weekend (down to 100 today) so I think it better not to be around any other germy people. My throat hurts, my nose is dripping, I’m coughing, my joints hurt – waah, waah, waah – and I’ve got to get the issue finished so I can get to conference.
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Today the folks in Greensboro - Tillman and company - did The Human Race fundraiser. Last year Karen won a local volunteer of the week award for her efforts. Tommy, her husband, has now put the video on YouTube. I thought you all might like to see it.
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Just passing this along - it's a scholarship time of year! If anyone else knows of other scholarships the Hermansky-Pudlak Syndrome community might be eligible for, let me know. Also, NFB state affiliates often offer scholarships using the exact same form. Sometimes they're easier to get than the national ones - I can say that as both a state and a former national scholarship winner. 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 that one scholarship may be given to a person employed full-time while attending school part-time, and
must participate in the entire NFB national convention and in all scheduled scholarship program activities.
In addition to a scholarship, each winner will be brought to the 2008 National Federation of the Blind Annual Convention in July at Federation expense, providing an excellent opportunity for high level networking with active blind persons in many, many different professions and occupations.
The scholarship application deadline is March 31, 2008, 5:00 p.m. Eastern Daylight Time.
What kind of student wins an NFB scholarship? Read about past NFB National Scholarship recipients in the August-September issues of the Braille Monitor.
· Braille Monitor August-September 2007
· Braille Monitor August-September 2006· Braille Monitor August-September 2005The 2008 Scholarship Application Form is made available online, by mail, and in the upcoming December 2007 issue of the Braille Monitor (available in large print, Braille, cassette, and online). To apply for a scholarship online, please begin here:
· About the NFB Scholarship Program· Submissions Checklist· Applicant Instructions· 2008 Scholarship Application Form (online)· 2008 List of Scholarships· NFB Divisions, Groups, and CommitteesTo print a 2008 Scholarship Application Form, download the Word document:
· 2008 Scholarship Application Form (Word document)
NFB Scholarship CommitteeAnil Lewis, Chairman (Atlanta, Georgia)Office: (404) 371-1000 E-mail: scholarships@nfb.org
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