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November 2007 - Posts
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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.
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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 when this stuff comes up. Do I go into work and try to look like I’m in the game for appearances sake, or do I stay home, do what I need to do and maybe actually get something done.
I elected for the latter, which I’m not sure was a popular choice. But, I got so much done yesterday afternoon and evening! I was feeling better and in the zone, if you know what I mean.
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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 burned – perfectly reasonable concerns if you’ve never cooked as a blind person.
As a result, often kitchen skills that get passed down from parents to children get overlooked for kids with vision impairments. And sometimes, frankly, if parents have a lot of anxiety about this, it can be easier on the kids learning from someone else.
One advantage to growing up in a single parent house was that there were some household things we had to learn how to do out of necessity. While I wasn’t much of a chef as a teenager, I could bake cookies and brownies and hamburger helper – enough to feed Ryan and I when mom wasn’t around.
When I left home for college, I spent the summer at the Louisiana Center for the Blind to learn things like Braille, orientation and mobility, how to use readers in college etc. One of the required courses was cooking. To finish the program, we had to prepare a meal for 40 people, by ourselves and from scratch, blindfolded (if we had any vision). Talk about a confidence builder!
Homesick for Germany, I decided to make one of my favorite German meals that was to be topped off by Black Forest Cherry Cake, with homemade whipped cream since I wasn’t allowed to buy it. I’ll never forget that as I was making that whipped cream, Joanne Wilson, the center’s director at the time, was giving a tour of the center to a group that was going to help with some building improvements. I could hear her in the hall talking about me. She was really talking me up. She told them how much progress I’d made over the summer because I was trying to finish early so I could leave for college. (The program was typically six to nine months.) And as she opened the door and the group filed into the kitchen, I happened to turn on the mixer to whip my whip cream. Trouble was I turned it on the highest setting and cream went everywhere!
It was all over me, all over the guests, on the cabinets – just everywhere.
We all have those learning moments, sighted or not or somewhere in between. It’s important for parents to realize that. It’s important that such important life skills like cooking don’t get overlooked because you don’t know how to approach them, or because the microwave is such a great invention.
So, with that being said, the HPS adults will remember I was talking about extra long oven mitts for those that are a bit afraid of misjudging distance and getting burned taking things in and out of the oven. At this link you can get an idea of what I was talking about. https://www.independentliving.com/products.asp?dept=496
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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.
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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. Sure enough, who ever took my call the night before failed to put me in the book for the next day. The cab showed up a half hour late and only after I called to complain.
When I arrived at the doctor’s office, they were running behind. I didn’t get out of the office until noon. I hadn’t eaten that morning and needed to take some medication, so I grabbed lunch and then called a cab. They took an hour to show up.
By this point, the work day was pretty much shot, so I had the cab take me to the pharmacy. That took another hour!
I had seven scripts to fill. You know you’re on too much medication when you’re sitting, waiting on your scripts, and you hear the pharmacist from the back say, “How many scripts does this Kirkwood have anyway?” HA – And I only filled half of them! Grin!
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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!
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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 deadline because the magazine has to be at an event. I’m dreading the push, the rush, the craziness that I know the next few weeks will bring. It’s just been so, so, so nice to sit in my living room and listen to soothing music and read!
Mr. Boom Boom went away for the holiday so it’s been so wonderfully peaceful! I can’t remember the last time I had four days at home that didn’t involve sickness. I could get used to this.
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 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.
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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.orgNational 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 Federation of the Blind Jernigan Institute, which will then Braille Santa’s response.
Marc Maurer, President of the National Federation of the Blind, said: “We are pleased and proud to partner with Santa Claus to assist him in making Christmas even more fun for blind children. This enormously successful program not only assists St. Nicholas in his work, but also helps to promote Braille literacy among blind children. Braille literacy is the key to success and opportunity for the blind. Writing a Braille letter to Santa Claus and receiving his response in Braille is an exciting and fun way for blind children to practice their Braille skills.”
The National Federation of the Blind will send Braille replies from Santa to letters received from blind children and their parents. Letters to Santa may be in Braille or print. Each reply will be in Braille and print so that parents and children can read together. The replies will be in contracted Braille unless otherwise specifically requested.
Braille or print letters to Santa may be sent to Santa Claus, c/o National Federation of the Blind, 1800 Johnson Street, Baltimore, Maryland 21230. Letters may also be requested at www.nfb.org. Letters must include the writer’s name, the child’s name, birthday, and gender, mailing address, and a telephone number in case Santa’s helpers at the National Federation of the Blind have questions. Letters must be received by December 18 to ensure a return letter is received before Christmas. For more information about this and other programs of the National Federation of the Blind, visit our Web site at www.nfb.org.
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About the National Federation of the Blind
With more than 50,000 members, the National Federation of the Blind is the largest and most influential membership organization of blind people in the United States. The NFB improves blind people’s lives through advocacy, education, research, technology, and programs encouraging independence and self-confidence. It is the leading force in the blindness field today and the voice of the nation's blind. In January 2004 the NFB opened the National Federation of the Blind Jernigan Institute, the first research and training center in the United States for the blind led by the blind.
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 Ingredients1 orange2 tablespoons butter1 egg1 cup sugar1 cup chopped cranberries2 cups white flour1/2 teaspoon salt1 and 1/2 teaspoons baking powder1/2 teaspoon baking sodaPreheat 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.
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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. 
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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.
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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. Click on the banner above. The test is a blood test. Currently, we have not found all of the genes that cause HPS, and not all the gene types have a test commercially available. Thus, genetic testing could easily be inconclusive. Instead, the platelets are viewed under an electron microscope. If they lack delta dense bodies, and the patient has albinism, they have HPS. Think of it like this. Delta dense bodies are like chocolate chips in a cookie. If you don’t have HPS your blood platelet cells will look like chocolate chip cookies under the microscope. But, if you have HPS, they’ll look like butter cookies – no chips.
3. Does everyone with HPS get pulmonary fibrosis?
No. Currently we know of eight types of HPS. So far, it seems that types 1 and 4 do cause pulmonary fibrosis, but the age of onset of these symptoms varies widely.
4. Does everyone with HPS have a bleeding disorder?
Yes. Because the definition is a lack of dense bodies, people with HPS do have a bleeding disorder. The severity of this bleeding disorder can vary, however. That’s why so many of us never get a diagnosis until adulthood. Many people with HPS do bruise easily, so easy bruising is a sign. But, some of us bruise more easily than others. Some people with HPS have nosebleeds, and some women with HPS have very heavy and long female cycles. But, this isn’t true for everyone.
5. Does everyone with HPS have digestive problems?
No. Estimates seem to range from 15 to 30 percent of people with HPS have some sort of digestive problems that can range from a mild kind of irritable bowel syndrome, to problems that very much look like Crohn’s disease and can become quite severe.
6. I’ve been told I have OCA, OA etc. So, that means I don’t have HPS right?
Find out how your type of albinism was diagnosed. Very often doctors make a diagnosis about the type of albinism one has based on visual observation alone. This is essentially a guess and won’t rule out HPS. People with HPS can look as though they have all types of albinism. Some have very light hair and skin. Others appear to have ocular albinism and can even have dark skin and black hair. So, unless you’ve been gene tested and confirmed to have some other type of albinism, you can’t rule out HPS.
7. Is there a cure for HPS?
Not at this time.
8. Are there any treatments?
As with all other types of albinism, the use of sunscreen can help prevent skin cancer and the use of low vision aids can help with vision.
The bleeding issues of HPS can be treated in a variety of ways depending on the nature of the bleeding. Doctors, however, must be informed about HPS and how it works. Often doctors will perform PT or PTT tests. These tests will often come back normal for someone with HPS.
The digestive problems associated with HPS can frequently be treated with medications. The success of these treatments varies, however. Some people with HPS require more aggressive treatment than others.
While there is no cure for the pulmonary fibrosis of HPS, there is much research underway and several investigational drugs in the works. For some with severe lung disease, a lung transplant may be an option. It is important for people with HPS to avoid things that may pose a risk to their lungs and accelerate the course of the disease – things like smoking, industrial chemical fumes etc. People with HPS should be very vigilant when it comes to colds and respiratory infections.
9. HPS is a Puerto Rican disease right – I’m not Puerto Rican so I can’t have it.
No, while HPS is much more common in Puerto Rico, it occurs in all nationalities all over the world. We have HPS’ers from England, Ireland, Brazil, India, Pakistan, Israel, Germany, Belgium, the Netherlands, Singapore, China, Japan, Uruguay, Iran and pretty much any where else you can think of.
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