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Showing posts from December, 2006

Keeping busy at NIH

Ahhhhh - a TV, internet access, my mobile phone and my paints. Who could need anything else? This is me working away at NIH, trying to keep busy. The lovely little hour glass thing was to collect phlegm samples. Nothing like painting and trying to cough up a world-class goober at the same time!
Here's a picture of a patient room at NIH, although it's a bit dark. That's my fault. Those lovely huge windows create a lot of glare so I shut the blinds. My friends in college used to tease me that I lived in a cave. My apartment is usually dark because having albinism means my eyes can be a bit light sensitive.

The check is on its way

As regular readers know, the revenue from the Google ad on this page is donated to the Hermansky-Pudlak Syndrome Network. Well, this week I received my first check from Google Adsense for $122.25 and it’s now on its way to the HPS Network. Thanks to the regular readers that made that possible!

Meet Carmen and Nancy

Meet Carmen and Nancy, otherwise known as Moe and Curly after an NIH visit a few years ago with another HPS'er during which the threesome gained the nick names, Larry, Moe and Curly. This photo was taken in Donna's kitchen during the fall board meeting. Both Carmen and Nancy serve on the Board of Directors of the HPS Network.

5NW at NIH

The hallway on 5NW at the National Institutes of Health where people with Hermansky-Pudlak Syndrome typically stay during their visits.

Sleepy Saturday

It turned out Aunt Phyllis and Nancy couldn’t come up – but it was perhaps for the best as I’ve felt so out of it today. Last night I felt sick to my stomach and was up all night thinking I was going to vomit. My stomach was crampy and I just couldn’t sleep. By the morning this feeling went away, but I hadn’t slept so I ended up drifting off until mid afternoon.

I had planned to file, catch up on so many things today etc. but none if it came to pass. I’ve felt so fatigued today and every little thing seems to take a lot of energy. I’m feeling pretty frustrated.

I know that next week work will be back in full swing. Conference preparations will be in full swing. And, the HPS Newsletter needs to be wrapped up ASAP.

I’ve been listening to my neighbor’s TV all day as well. It’s rainy here and thus I guess he hasn’t gone anywhere for the day. Goodie! I’m so sick of living in an apartment – at least one with thin walls. When you don’t feel well all you want is a little peace and quiet!

NIH - patient library

Up on the seventh floor there are a number of things available to patients. One of them is a library. Here you can check out books, audio books, use computers in the back of the room, hang out etc. And, if you're looking to get rid of any books from home, the library takes donations.

Looking down from the fifth floor - NIH atrium

This is looking down from the fifth floor. The thing in the middle is a sculpture that has a water fountian and the circles are tables where you can drink your treat from the coffee shop.

Looking up in the atrium

In the center of the new Clinical Center there's an atrium akin to what you'd find in a lovely hotel. This is a shot looking up. I can't remember if it's one of mine or if it's one I got from NIH public affairs. I took some that look very much like theirs, and now I'm confused. At any rate, on each floor in the center you can walk around and look down. There are lots of chairs, sofas and even study cubes like you'd find in a university library where you can get away for a bit.

Keeping entertained at NIH

NIH really does try to make your stay at the Clinical Center as pleasant as possible. They offer a number of "recreation therapy" opportunities. There's a craft room (seen above) where you can go to work on arts and crafts. The room also has a kitchen. Pictured above are Karen and Bob, fellow HPS'ers that were in the hospital with me last year. We were all getting lung lavages. Here we were taking a cooking class. Karen and Bob are sampling some salad.

Who needs shoes?

This isn't as great a picture, but this is the same little girl this year. It might not have been too bad if she didn't move and make it blurry. Grin!

Celery, yummy

This is my cousin Danny's little girl a few years ago. I like her expression.

Confessions of a wannabe photographer

Okay, I’ve got another confession to make. I’ve always wanted to take a class in photography. Today I know several people with albinism that are fantastic photographers, and one who does it professionally. But it’s one of those things I didn’t think I’d be so great at and now I wish I'd tried it.

When I was in high school photography still involved dark room work. I remember taking art classes and having to go into the photo lab occasionally to retrieve supplies. The stench of the chemicals made me feel as though the wind has just been knocked out of me. (Maybe one of those early signs I didn’t know to notice about HPS.) The idea of working in there with that smell for hours turned my stomach. (Probably a blessing. It wouldn't have been good for me.) Plus, I wasn’t sure if I’d be able to see the photos clearly enough to tell which ones were in focus. I still have that problem at work. I can tell if the composition of a photo is good, but focus sometimes eludes me.

Then a few yea…

Me at NIH - four months into Pirfenidone trial

Here I am at the NIH at my four-month follow up visit. Man, I hate pictures of me! Could some movie star from Hollywood please play me for a while?

A better picture of Ryan

Here's a much better picture of Ryan!

Ryan the model

Poor Ryan. Ryan has the added burden of being my little brother. That means that I feel perfectly justified asking him to do things I might not ask of just anyone.

One of the things I do for HPS is to gather photos. The HPS Network regularly needs good photos of HPS’ers in all states of life, from little kids to adults. We need them for educational purposes such as presentations to doctors. We need them for the newsletter. We need them for fundraising materials.

I’m trying to build up my collection of HPS photos taken at NIH as participating in research is such a big part of the HPS life. But, it’s hard to take pictures of yourself. Besides, until I lose about a gazillion pounds I’m never going to be happy with myself on film. Ryan, on the other hand, is not only photogenic, but he’s usually around because he lives in the area and visits me at NIH. So, I beg and plead to get Ryan to pose for various photos I can someday use in a powerpoint presentation etc.

He cooperates grudgingly. This…

When the dust settles…

From reading my blog you might get the impression I’m a neat freak. The truth couldn’t be further off the mark. Yet, as the daughter of the original cleaning Nazi - Mrs. White Glove herself - I feel as though I’ve failed at life as a grown up if my apartment isn’t straight and spotless. It’s a goal that, even before Pinesol made me a respiratory disaster area, seemed impossible to meet. I just couldn’t ever clean well enough. There was always something I missed, something I didn’t see or something I just plain forgot about.

I remember the first time my mom came to visit me as an adult – someone graduated from college and living in an apartment as opposed to a dorm. Knowing I’d be getting the white glove inspection, I took the day before she arrived off of work and cleaned in a frenzy something akin to a military operation – systematic and thorough so as not to miss a single thing. I cleaned the fridge, the oven, took everything out of cabinets and cleaned them and made sure the ashes f…

More on Pirfenidone in Japan

The following article appeared on PharmaLive.com. I thought those of us with Hermansky-Pudlak Syndrome might be interested. I'm excited about it. To me, it just bolsters the case that Pirfenidone could be useful to us. And, hopefully, the research in Japan will only help us here as well.

Shionogi: Results of Phase III Clinical Trials of the Idiopathic Pulmonary Fibrosis Treatment S-7701

OSAKA, December 22, 2006 — Shionogi & Co., Ltd. (Head Office: Osaka; President: Motozo Shiono) today announced that it has achieved the primary objectives of Phase III clinical trials for the idiopathic pulmonary fibrosis treatment S-7701 (generic name: pirfenidone), which the Company is developing in Japan under a license from U.S.-based Marnac, Inc. and KDL, Inc., Tokyo.

Idiopathic pulmonary fibrosis (IPF) is a medical condition of unknown etiology with poor prognosis in which progressive fibrosis of the alveolar walls produces irreversible “honeycomb lung”*. In general, restrictive impairment…

Santa’s little Hermansky Pudlak stocking stuffer

As if I weren’t already in a super mood from my recent test results (still grinning here in Kansas), I found that Santa had left me a little stocking stuffer in my e-mail. It seems the stock of the drug company that makes Pirfenidone, Intermune, just went up a nice little bit last week. Why?

Well, it seems that the phase III trial for idiopathic pulmonary fibrosis underway in Japan issued some preliminary results, and they were quite promising. Now, as soon as I’m finished with the holidays I plan to track down this research and read it for myself.

But, the knowledge that their trial is going well was just that little bit of extra good news for me Christmas morning. We seem to be on the right track.

Cheaters Fudge

Another recipe for the non-cook! I tried to post this one a bit ago for Sheena, but when I made it, I obviously wasn’t remembering something because I got a very tasty chocolate mush. I figured out what I did wrong and here’s the correct recipe. I had to make a batch just to try it out. Don’t worry Kevin. I didn’t eat it. I gave it away to neighbors. Well, I did have a piece yesterday, and another today – but the rest will be leaving the house shortly! And not by way of my stomach! I promise!

Ingredients
1 package milk chocolate chips
1 package peanut butter chips
1 can (14 ounces) of sweetened condensed milk
1 stick butter or margarine

Get out either a 9’ by 9’ or 9’ by 13’ pan (depending on how thick you want your fudge.) Grease the pan lightly. In a large bowl dump all the ingredients together and melt them in the microwave. Stir it occasionally so as not to over cook. When it’s melted and blended well, pour it into your pan and put it in the fridge to set up. It’s best overnight, but I …

Merry Christmas!!!!!

Merry Christmas to everyone!!! I hope everyone is having a wonderful day with family and friends creating wonderful memories.

It’s been an odd Christmas for me, but it’s been nice. Although I didn’t get my tree put up (which actually has me more bummed than spending the holiday alone. I LOVE Christmas trees.) I’ve had Christmas music playing or Christmas specials on TV as I cleaned. I’ve been cleaning for three days and I’m still not even through just the surface cleaning.

This may seem silly, but I’ve had a lot of fun these past few days just thinking about Christmas memories. Perhaps later I’ll post some of those. Right now I’m on a Windex break. I try to clean with vinegar when I can, but I’ve needed to break out the Windex for a few tasks today. The problem is I get so out of breath when I do this sort of cleaning.

So, more on Christmas later. Back to cleaning out kitchen cabinets for me!

What a strange Christmas

Friday I went into the office even though I had the day off. I’ve missed so much work this past month and I was back from NIH and felt pretty good – so I went. It was a quiet day as there was hardly anyone there. And the people that were there weren’t doing much of anything but standing around and talking. It gave me a chance, however, to at least catch up on my work e-mail. That took until past noon!

Today I’ve been home all day. I intentionally am spending the holidays alone so I can catch up on all the things that I’m behind on or that are overwhelming me. That’s the trouble with missing so much work for the drug trial and health stuff (not that I’m not thrilled to do it) – I never get time off to do simple things like clean, or sort, or file. So often on weeknights I’m just too tired, and if I’m not too tired I’m working on freelance work or HPS work. It feels sometimes like I’m not thriving in my life – I’m just surviving it. I’m just doing what I’ve got to do to keep my head abov…

NIH Clinical Center entrance - Building 10

This is the new entrance at the NIH hospital known as the Clinical Center or Building 10. It's where the shuttle will drop you off from the airport or the hotel.

NIH Coffee Shop

Yes, even at NIH I can get my lattes! Grin! Thank God for small blessings like these. After a week of hospital food, even if it's not bad for hospital food, I really enjoyed my latte.

NIH at Christmas

This is the NIH hospital lobby at Christmas.

Can’t stop grinning

Thursday I couldn’t stop grinning. I thought my cheeks might crack because I just couldn’t wipe the grin off my face. Even Kevin’s lecture about losing weight didn’t dampen my mood – or at least it had a delayed reaction.

I think having nearly an entire week at the NIH is exactly what I needed. The recent weeks upon weeks of feeling tired, sick and generally run down have been hard and being at NIH was like getting sent away for a while. I did take work, but since I was unable to access the server I really didn’t get much work done. Perhaps that was God’s way of giving me a vacation. Grin! I think it helped. I feel rested for the first time in a long while.

Mind you, I’d rather be vacationing by spending the holidays in Germany with my mom and brother, or doing something fun or even just being at home and getting my personal life together. Even so, this was a particularly nice NIH trip. No exceedingly painful tests, lots of rest, plenty of relaxation and time to myself, and I got to see…

And another one..

This is a recreation of one of the oldest buildings on the campus.

Other entries in the NIH gingerbread house contest

I especially liked the entries that tried to recreate buildings on the NIH campus. This is one.

Another view of the 5NW creation

Santa's helpers on 5NW

This is a picture of the gingerbread house created by the nurses on 5NW (Five North West) at the Clinical Center of the National Institutes of Health. This is the unit where those of us with Hermansky-Pudlak Syndrome usually stay when we're inpatients at the hospital. I'll be posting several pictures of the gingerbread houses. This contest was serious stuff! The nurses said they created this work of art in three days. I'd post all the images together, but Blogger seems a little overwhelmed by the task. Because so many of us with HPS regularly go to the NIH, staying in the hospital there sort of becomes a shared experience. We all know the same nurses or can relate to the same places or the same experiences there. It becomes a very special place to many of us. So, I thought some of the HPS'ers would enjoy the pics! Grin!

Good test results for Christmas - Pirfenidone four month report

The test results are in. I haven't been able to blog about them until now because the network at NIH has been up and down this evening. The good news is I did read my pulmonary function tests correctly. My FVC (forced vital capacity) was 91! This is up from 81 four months ago when I started the Pirfenidone trial.

Dr. Gahl gave me a rather lengthy explanation about how I shouldn't get too worked up. This isn't really a huge change because none of the other numbers changed much etc. Yep, I know that. At the same time, I'm grateful, giving thanks to God, and hey, I don't have to go into Christmas with bad news. I can CELEBRATE! Dr. Gahl cracks me up. What doc, I look too happy to you? Just let me enjoy this little moment. Grin! My DLCO did fall a bit, from 63 to 60, but that's still within the margin of error. My oxygen saturation also did fall on the six-minute walk test to 94, which isn't good but is about the same as four months ago. I was, however, able to …

Still waiting

I'm still waiting for test results. I probably won't get them until late this afternoon. There have been a few developments, but until the doctors have had a chance to discuss them, and then discuss them with me, it's hard to know whether they're big developments or little ones. I can't imagine that they're that bad as I'm feeling pretty good.

They did see a "mystery" spot on my right lung. I reminded them that last time I was here there was a "mystery spot" and that they stood around and debated about whether it was an infection or fibrosis. Then, when my PFTs were off, they decided it was fibrosis. If it's the same spot, that would probably confirm it's early fibrosis I would guess anyway. So, I'm waiting to find out if this is a change from the last CT scan or not. The good news is Kevin didn't think there was much change - but the pulmonologist hadn't seen it yet.

They've also found blood in my pee, according …

The waiting game

Today's tests were pretty easy. I did pulmonary function tests this morning, blood work and am sitting here waiting for more blood draws and trying to not only cough, but cough up some nice flem samples. The docs don't seem too concerned about the cough. They think it just took me a while to get over the strep and that I probably picked up a virus on top of it along the way. But, they want to culture some flem just to be sure I haven't picked up something bacteria.

This morning I was quite please to see the technician actually print out a copy of my results and put it in my chart. The last time I was here they just sent them through the computer system and I couldn't look at them until Dr. Gahl was ready to talk to me.

So, I didn't say a word, but as soon as I got out of the lab, down the hall and into the antrium area, I sat down and pulled them out to see. I 'm not celebrating until my wrap up because I'm not a doctor and there may be something there that I…

In the beginning there were legal pads

Katy's questions about conference have had my mind churning about all the things to tell a new person about conference. The Hermansky-Pudlak Syndrome Conference really is an amazing thing. It grows about 20 percent a year.

The very first HPS Conference was held at the Appell dining room table with I think about four families. Seeing the home video really is a treat both because it's so hard to believe we started so humbly and because it's amazing to see how far we've come. At the first conference the Appells invited some of the world's leading rare disease researchers to a "medical conference" at their house. And, they actually showed up!

The home video is a riot. There's a guy drawing pictures of DNA on a yellow legal pad because no one thought to have a flip chart. All the while the kids are running around the table, in and out of the kitchen and living room - until Ashley's room became "child care." Every time I think about it it'…

Christmas Wreath Cookies

I've been meaning to post this recipe for Elsie and Marcus, and who ever else might want it. Once again, it's a recipe for the non-cook. Super easy! And, these cookies look very festive on a tray.

Ingredients
1 bag of small marshmellows
3/4 cup butter
7 cups of corn flakes
green food coloring
The little red hots used for baking (in the cake decorating section)

Get a BIG bowl. In the microwave melt the butter and marshmellows together stirring now and then so they blend well. Add the food coloring until you get a nice hollyesque green. Pour this mixture over your seven cups of corn flakes (nice to have them already measured in another huge bowl to the side). Gently fold and stir in until all the corn flakes are covered. Take a spoon and dollop out clumps on wax paper. You can try to form them into wreaths, but be warned, this mixture hardens pretty fast so you've got to do this part quickly. Put two to three red hots on each clump. That will help them look like wreathes. Let them …

I have arrived

Okay, now you're all going to find out just how horrible my spelling etc. really is!!! (Even ending a sentence with a form of the verb "be" oh the shame!) I have arrived at the National Institutes of Health for my first follow up visit since beginning the Pirfenidone study.

I'm an inpatent this time which means I have bedside internet access, but the screen is terribly hard to read and it's an e-mail or game terminal only. I typically at least write my posts in Word first!

I haven't yet figured out how to use the laptop I brought to do file stories though - sorry office! They won't let you unplug the terminal to hook in your network connection. There are some wireless hot spots, or so I've been told, but I don't have a wireless card. That's the long way of saying, what you see is what you get! Hey, at least I can blog! We've got to take care of the important things you know!

It seems like every time I fly into Regan National Airport it'…

The Hermansky-Pudlak Syndrome Conference – gaining a second family

So, Katy asked to hear more about the HPS Conference, and as I’ve been packing tonight my mind has been a flutter as to where to start. What’s so great about the HPS Family Conference? I could generate quite a list!

But, for starters I think one of the greatest things about going to conference is seeing my second family. Many of my HPS friends are like a second family, and sometimes they know me better than my own family!

When I was first “officially” diagnosed with HPS it was not only devastating – it was the loneliest feeling in the world. At the time I had a good friend that was a breast cancer survivor. Trying her very best to be supportive and feeling as though she’d walked in my shoes – she tried to offer a hopeful outlook. I politely listened, but inside I wanted to scream at her.

How dare she presume to know what this was like? There’s a treatment for breast cancer. All this survivor speak had a root in something that was actually hopeful because there was something she could act…

Happy Hanukkah!

I just wanted to wish the HPS readers that celebrate this holiday a Happy Hanukkah! I hope you’re enjoying the holiday in the company of good friends and family.

To those who are not aware, just as HPS is most common in people of Puerto Rican ancestry, there is also a much higher incidence of the Hermansky-Pudlak Syndrome type of albinism among people of Ashkenazi Jewish background.

I must confess, I know the basic story of Hanukkah but that’s about it. If there are any HPS’ers out there who would like to share something about your family’s celebrations, please feel free!

Kudos for Overland Park City Hall

Well, I’m supposed to be cleaning house and getting ready for my trip, but I’ve been running some errands and I’m tired and just need to sit for a minute – so I thought I’d blog a bit.

If you’ve ever been involved in the world of blind politics, you know there are several different philosophies about how blindness affects daily life, who is really considered “blind” and how we should cope with this disability.

I’ve always fallen into the camp that one should always be extremely careful about asking for society to make adaptations for us. Nothing is free in life. Everything comes with a price. Society, in general, thinks that blind people are helpless and unable to adapt to the sighted world. They say things like, “I just don’t know how you do it. If I closed my eyes I could never do xyz….” What they fail to appreciate is that learning to adapt to low vision or blindness requires learning a set of skills, just like everything else in life. Once those skills are learned not seeing well ca…

Christmas shopping for the cure

Because I haven’t been able to get out much this holiday season and do my holiday shopping, I’ve done more shopping online this season than ever before. And, just to get a plug in here, I was able to find all of my gifts through the mall at www.igive.com so that the HPS Network gets a percentage of the money I spent (albeit admittedly tiny.)

So, if anyone else is doing the last-minute shopping thing online, this is just a reminder that you can shop at igive. Some of the stores I’ve visited in my holiday shopping are: Toys’r’Us, JCPenny, Target, Staples, Coldwater Creek, Eddie Bauer and Barns&Noble.

So, shop, ‘er, click till you drop!

The getting well creep

Every day I feel just a tad better, which is way better than feeling just a tad worse. Yesterday my cough was pretty bad and today it’s somewhat better. It’s the getting-well creep.

This cold/infection/strep thing has put a major dent in my holidays. I love Christmas. I love the reason for the season of course, but I must confess, I also love some of the external trappings as well. I love baking Christmas cookies. It’s an occasion where I can bake but since I give most of the cookies away, or take them to parties, they don’t end up as part of my ever expanding backside. I love Christmas decorating. I love putting up the tree and in my silly balanced way trying to space the ornaments out so that there aren’t any clumps of all the same colors in the same place. I love buying Christmas gifts and wrapping packages so they look just gorgeous when you give them to someone. I love singing Christmas carols and going ice skating with the camp fire kids.

This season, however, I have done none of …

If you have a family member that has passed away from Hermansky-Pudlak Syndrome…

I’m putting this announcement in the HPS Newsletter, but I’m also posting it here for some of the regular HPS readers. If you have a family member that has passed away from HPS-related causes and would be willing to agree to share your loved one’s medical records with the National Institutes of Health, please contact the HPS Network at: 1 (800) 789-9HPS.

Researchers at the NIH are currently trying to compile more exact data about the mortality related to HPS in hopes of illustrating to the greater medical community how urgent our situation really is and how badly we need better treatments. I know that seems like a no brainer to those of us that live in the HPS community – but sometimes you’ve just got to be able to provide very exact data to keep the wheels moving forward.

If your family would be willing to contact your loved one’s doctors and help us obtain their medical records, all of us fighting HPS would very much appreciate your assistance in the journey to the cure. If there are…

Yawn

I’m tired. I don’t know why I’m so tired as I’ve been sleeping like a baby all the way through the night. This morning I was sleeping so well that I just about missed my bus! It was rainy and cloudy and somehow the beep of the alarm was just an annoying thing to be swatted in a half-awake state – until I realized I had to be on the bus in 20 minutes!!!!

My cough continues and after a bout of coughing I not only feel tired, but down right exhausted. This afternoon I put my head down on my desk several times and very nearly fell right asleep.

The good news is my feature was okay so no last-minute panicky interviewing. That means I’m in okay shape at work. I wish I was a bit further along on the February issue, but it’s okay.

My antibiotics and cough medicine should finish up tonight and then I’m off of both of them. I know that’s not going to be good for the cough. So, the dilemma now is do I go back to the local doc to complain again – missing yet another day of work – or do I just hold o…

Update on Karen II

About a week ago I posted a request for prayers for Karen Tillman’s friend Karen who has been a friend of the HPS Network by helping Karen and helping to raise money for the Network. This evening Karen T. sent me an update.

Karen II is back in surgery this evening and actually has been there all day. They’ve found another pocket of staph (sp?) in her neck and think this might be why she’s been unable to move her arms and legs.

Please keep praying for her, and if anyone else would like to send her a card to let her know the HPS community is thinking of her, e-mail me at: hkdawn@yahoo.com and I’ll send you her hospital address.

Thanks!

Small steps

Today I was trading e-mails with Kevin at NIH in preparation for my trip next week. I warned him that even though I’m doing much better, I’m still coughing a lot and am still quite congested. I’m so worried about how that will affect my tests. He e-mailed back, “Heather, don’t worry about your cold. You just get through this week and get here safely and we’ll take care of you when you get here.” AAAhhhh…..what a soothing thing to say! Grin! I’m sure he has no idea.

I don’t mean to gripe so much about being single (although when I’ve written about being single and TV shows, I get the most e-mail!) – but sometimes being alone and sick is not a good combination. It’s the little things. How nice it would be, for example, to have someone come home and bring you a box of Puffs with aloe on them for a sore nose. Yes, I have friends I can call to pick things up at the drug store if I can’t do it. I’m sure someone from my church would be only to happy to do it. That’s not the point. It would ju…

Long night, Long week

This is going to be a long night, and a long week. Last week I missed almost the entire week of work thanks to this strep infection, and the week before I may have physically been at work, but I was feeling so badly that I wasn’t exactly efficient.

Yes, I am feeling better, but STILL not great. I feel just a tad better every day. I'm still coughing and still blowing my nose a lot. Today, however, my stomach has been acting up. I haven’t been eating much, but this evening I went to the Mexican place around the corner and got a cup of their wonderful tortilla soup. It’s got a clear chicken broth with bits of chicken, tomato, cilantro, onion, a bit of cheese and of course, tortilla strips. They also put a few slices of avocado on the top. Ohhh…soooo good and not really spicy. But, within 30 minutes of eating this I had to empty my ostomy pouch three times. I felt weird – no stomach cramps but more like a sort of light headed queasy feeling.

So, is this a reaction to not eating? To the …

Hack, hack – snort

Every day I feel a little better yet still haven’t returned to my normal self. I am sleeping now – boy am I sleeping! I slept about 10 hours last night straight. Yesterday I kept trying to work on my stories and I’d get going for a bit, then suddenly start coughing or feeling overwhelmingly tired, so I’d nap for a bit. I’m really starting to stress out about the issue at work though!!!

Today I need to go to the bank and the drug store, but I think it’s taken me so long to get moving this morning that I should wait. The bank’s hours are all screwy, and I don’t want to get all the way there only to discover I can’t get anything accomplished.

My going to the bank, grocery and drug store has just become a much more complicated task. It’s a blind thing. There’s a street light at 79th Street, and then another one at 75th Street. Crossing Metcalf, the major street that runs by my house, is dangerous without the light because it’s very busy. But, on one side of the street someone has bought one…

Chicken Curry Salad

Believe it or not, my Hermansky-Pudlak Syndrome friends and I actually do talk about things besides HPS. HA! Lately, with the holidays, it seems we talk a lot about our favorite recipes.

It may come as a shock to those that know me, but I actually can cook. I don’t very often, but I do know how. Yet, as a single person I typically go for the quick and easy recipes. One of my very favorites is chicken curry salad. Okay, maybe not so quick, but it is easy. The trouble is I don’t exactly have a recipe, so you’ve got to be daring and willing to wing it a bit to do this one.

My mom says curry is good for the lungs. I have no idea where she read it, or why it would be true – but hey, I LOVE curry so I’m not arguing the point. Bring on the curry therapy!

Ingredients
Cooked chicken (however much you think you’ll need to feed your family)
Cucumber
Celery
Two oranges
Red seedless grapes
Red onion
Curry powder
Mayonnaise (I use the light kind)
Soy sauce


Cut up the chicken, onion, celery, cucumber, oranges an…

On the mend

I think I’ve started to turn the corner today. Mind you, I’m still not in the I-feel-just-great category but I’m definitely feeling better.

I slept last night – all the way through the night – and actually right through my alarm this morning. Thus, I opted to work from home, which I think was okay with my boss. Our company Christmas party was today, so I’d have only worked about two hours before being expected to make merry at a pub called Fox and Hound.

I’m all for merry making, holiday cheer etc. but I’m not in the mood. These functions tend to be political, and the politically savvy thing to do would be to show up and smile and try to make conversation. But every time I start talking out loud, I start hacking. This is probably not good for corporate politics. Can you imagine? You’re making small talk with some corporate mucky-muck and all you can do is nod your head while coughing this cough that sounds like a dog barking while gasping for air in between hacks? Lovely isn’t it? Well,…

Sent home from work

Well, I’m now two weeks into this, four days past starting antibiotics, and I’m still feeling crappy. This is an improvement over super ultra crappy, but I’m still not exactly feeling like I’m ready to start dancing yet.

Today my boss came over after I’d only been at work an hour and told me she’d been told to send me home. Wow! That’s never happened before, and to be honest, I felt the most amazing sense of relief. I feel so badly that I’m so behind at work, and I’m about to be gone for a week, and my responsibilities are not being adequately taken care of. I know there’s something major I’ve forgotten to do and I can’t think of it. I know I’ve got a feature outstanding as well. At the same time, I know I’m struggling and was very grateful to be sort of ordered home.

I am slowly improving. My cough, while still pretty bad, is much improved. I actually slept four hours in a row this afternoon, the longest stretch of sleep I’ve had in a week. My throat doesn’t hurt too much and is much l…

Still feeling under the weather

Thanks to all the well-wishers! I really do appreciate it. And yes Ana! I listened to you. Grin!!! Sometimes I just need a little motherly nudge.

This strep infection persists, although I think maybe (and it’s a maybe) the antibiotics started to kick in this evening. I’m feeling quite grouchy and very tired. I did go to work today and felt bad for all my co-workers who had to listen to me blow my fog horn and hack up a lung all day long.

I felt horrible. At noon, after talking to Mama Donna (who refused to discuss HPS business with me until I called my doc – just the sort of mothering I needed!), I called my doctor’s office back to complain that I wasn’t feeling any better and it had been two days. I got a call back from the nurse and a polite pat on the head with instructions to be more patient.

I hated to call, but felt a little better about complaining after Donna said I should be feeling better. This evening my sore throat is still sore, but better. I don’t feel quite as spacy in th…

Still feeling lousy

I stayed home from work today, as ordered, but to be honest, I still don’t feel much better. Maybe a tad better, but not well enough to be going back to work in the morning. I’ll go anyway. My doctor’s note says I can have off until Wednesday, and our issue is supposed to be going to press. The newsletter comes out Thursday, so I’ve got to be there.

But, still, I feel so frustrated. I’m so behind on so many things because I’ve been so tired. Counting the weekend I’ve been home for four days – four days straight – and I’ve gotten nothing done except for a load of laundry, and that was emergency laundry. (A girl’s got to have clean underwear! Even if all she’s wearing is a night gown and bathrobe.)

My throat still hurts and still feels swollen. My ears now both hurt. I feel achy and am still coughing. Who could ever imagine so much snot could possibly fit into one head? I’m not totally sure what my temp is doing as my thermometer doesn’t seem to be working. It says my temp. is 94 – which …

Went to the doc

I went to the doc. this morning and was lucky enough to get to see my doc, Dr. Kennedy, as opposed to just anyone available. Yeah! And, I’m glad I went. It turns out I’ve got strep, and I’ve probably had it for several weeks now – so no wonder I’ve felt so tired and out of it.

This may sound silly, but I’m thrilled. I’m not going mad. I’m not just depressed. I’m not just being whiny about any old cold. There really is a good reason for how lousy I feel. Yahoo!!!

Even more amazing, I called the doctor’s office at 9:00 am and they had an appointment at 10:30 am. I was actually able to get out of bed, get ready and call the cab and I made it there exactly on time. Amazing!

My blood pressure wasn’t high and I’d lost seven pounds since right before Thanksgiving. Don’t ask me why. I can assure you it isn’t because of my stellar dieting – I’ve been pretty much a gluttonous mess since October when I was doing all that extra freelance work.

Getting home from the doc. was another story. I had to wa…

In a stew

I’ve spent the greater part of today in bed. This cold doesn’t seem to be improving. My head hurts. My throat feels like I’ve swallowed sand paper. My throat feels swollen. And the cough has now progressed from a minor little dry hack, hack, to something resembling a dog’s barking. This is the most worrying for me.

I think it’s just another sinus infection. But, I’m supposed to be at NIH in a little over two weeks, and anything respiratory going on could affect my test results. It’s not just a matter of whether my test results are a bit low – but if I’m on the Pirfenidone and not the placebo, a low result could make a ding in the overall data.

If, after 40 people are admitted to the study and they’ve all been followed for 18 months, there’s an improvement in the Pirfendone group over the placebo group, then everyone goes on the drug for the duration of the trial. Thus, I feel like it isn’t just about my health. It’s about the bigger picture.

Still, I’m sitting here contemplating going to…

Another prayer request

I spent quite a while on the phone tonight with my HPS friend Karen (regulars will remember her appearance on the blog before.) Karen has a prayer request that I wanted to share with the HPS community. Her friend, also named Karen (we’ll call her Karen II for clarity as I don’t want to use her last name online without permission) is in the ICU right now with a staph (sp?) infection from a recent surgery. Her condition is very grave and it’s unclear as to whether she’ll pull through.

Last year Karen II raised more than $1,000 for the HPS Network as part of HPS Karen’s fundraiser in Greensboro. Every year Karen organizes a group of Hermansky-Pudlak Syndrome walkers as part of The Human Race – an event organized by the volunteer center in Greensboro.

This has special meaning because Karen II has a number of health problems of her own. She was a miracle baby, born very early, and has had life-long medical issues as a result. She’s been through many surgeries and illnesses – but she cared en…