Living on the frontlines

Tonight I gave myself the night off, which was hard to do when I feel I have so many things that need to be done, and done yesterday. I think my mind just needed a night to veg. out and settle. Today I am feeling better about things. When Dr. Gahl gave me the report on the PFTs and the CT scan, once again I think he was expecting me to get upset. I was surprised I wasn’t more upset to be honest, but I suppose since I arrived praying my FVC wasn’t 69, an 82 didn’t sound so bad. Perhaps that was God’s way of cushioning the blow. That night I was a bit numb, and pleasantly distracted after meeting an old college friend for dinner. The next day, however, I was walking an emotional tightrope. I woke up late, even though I knew it would take some time to get across town. I was so tired! The long days leading up to leaving on the trip, little sleep for a week, and then all the emotional energy that goes into an NIH visit – and well, I was pooped out! I finally managed to haul my sorry carcus

I’m eating lunch as I’m back at work this morning. I was dreading coming in here. I was dreading any of the left over problems from last week. I was dreading trying to concentrate when I’ve got so much on my mind right now. I was dreading having to tell my boss that I needed a week off in a month, and that I’d be needing these weeks off periodically if I get into the trial. That went amazingly well, although what are they going to say really. But, she was very supportive. I’m dreading the utter hell it will be work wise to be gone for a week several times a year though. This morning I cleaned out my e-mails, which took three hours. It was a mindless task for the most part, and that’s what I need today, some easy mindless tasks that are just enough to keep me busy, but not overwhelm me. Feeling overwhelmed seems to be my theme right now. How am I going to get everything done? How am I going to miss all this work? How are we going to do all that needs to be done for the HPS Network? At t

I’m home. This will be short as I’ve only been home about five minutes, but being without a computer to write with during these past few days has been like torture for me! I’ve got tons of blogging to catch up on! I know several of the regular readers want to know how the trip to the National Institutes of Health went. I suppose it went well, all things considered. The good news is my FVC was better than the one taken at KUMed. The bad news is it wasn’t in the normal range either. They seemed to have a hard time getting a read, but the best one I puffed was an 87, and the worst one (after the abuderol ironically enough) was an 82. The other numbers were all down as well. They did a high resolution CT scan and it showed two new nodules on my lungs as well as “a patchy area” that seemed to be a point of debate. The good news is no one thought it looked like fibrosis, so they thought it might be from allergies. But, my allergies are actually much improved, so I’m not convinced. Dr. Gahl s

I’m tired, very tired. Tomorrow is my appointment at NIH. God, I just want it over with. This week has been a tough week as I was trying to get things done for work so that I could be gone. I worked most of Sunday, and worked until about 10:00 pm Monday and Tuesday. Then I got up early this morning and worked until right before time for me to leave. The taxi came a bit early so I got to the airport early. That meant I got an earlier flight. Unfortunately, my suitcase didn’t make it. I was told not to worry, it’s on the next flight and we’ll bring it to you. It’s now time for bed and no bag, no phone call, no one answering either of the local numbers for the airline, or the national baggage claim number. I’m tired. I want to go to bed. I want to put clean clothes on. I’m cranky. It’s my first bad experience on Midwest Express. And they were trying to he helpful, so it’s ironic. It probably doesn’t help that I always get anxious before these tests. I’m looking forward to having the whole

Breathing: pretty good Meds: took everything Other developments: a bit of joint pain today in my wrists Diet: one handful raisins, one diet coke, one ice tea, a plate of salad with fat free dressing, two pieces spinach and tomato pizza, another diet coke, three glasses of water

Breathing: pretty good Meds: took them, even the Flonase that I apparently can’t spell correctly. My sinus issues are acting up, so time to start taking it again. Other developments: bad sinus headache all dayDiet: ROTTEN! Okay, I’m on deadline and having writers’ block, so cut me some slack! One chicken wrap and fries, seven glasses ice tea, three glasses water, two pieces of fried chicken and cold slaw, two cookies, two diet coke

The heat finally let up for a few days, and although I’m feeling completely overwhelmed, I had to let myself play a little. It’s amazing to me what a difference the heat makes to the overall way I feel. When the temperatures suddenly went from triple digits to the upper 70s, or low 80s, it was as though someone had refueled my battery. Suddenly I had boundless energy and tried to catch up on all the things I’d let go because I just didn’t feel up to doing them. Saturday I went ice skating for the first time in a long time. I was helping out with Adventure Fitness, the camp fire club in my area for blind and visually impaired kids. We’ve got a new crop of little guys that are a lot of fun! But between the increased activities of the last few days, coupled with getting a little carried away at the ice rink, my body is in protest. My legs feel as though they’re cramped from my toes to my torso. My legs didn’t really hurt when I was skating. But when the bell rang and the session was over,

Breathing: Great! Meds: Took them, except the Flonaise Exercise: Walked more than a mile running errands, then ice skated for two hours Diet: Okay, not so great. I had a weight watchers frozen lasagna meal, a bottle of water, 1 diet Sprite at the ice rink, 2 more bottles of water when I got home, and then I went out to eat with Tina and blew it. I had two enchiladas and Spanish rice at the nearby Mexican restaurant, but since I didn’t cook them, they were very wonderfully cheesy! Very bad! I also had three glasses of ice tea, and a chai iced latte for desert made with skim milk.

Breathing: Excellent! (It was only 75 degrees! Big help!) Meds: took them, except the flonaise Exercise: Walked three miles running errands I’ve been putting off, swam for 40 minutes. Diet: cereal (but only ate a few bites, got busy on the phone and then it was soggy), turkey sandwich on wheat break with lettuce, tomato, onion and sprouts (light mayo), two shrimp enchiladas (easy on the cheese) and Spanish rice, one cup soft serve ice cream, four bottles water, two glasses ice tea, and one cup warm chai tea.

There’s a saying in business “Treat a customer well and if you’re lucky they’ll tell a few people; treat them badly and they’ll tell everyone they know.” Well, you’ve got to love the blogosphere! Now can I tell everyone about my airline ticket buying trauma Wednesday – and somehow that makes me feel better about it. Once I got the green light for NIH from Kevin, who by the way just called to tell me the PFT will be at noon next Thursday, I rushed to buy my airline ticket. It’s only a week before I am to travel, and I wanted to at least get the seven-day advanced purchase fare. The Hermansky-Pudlak Syndrome Network works very hard for every single dime. Fundraisers like garage sales and car washes are our primary source of funding, and an airline ticket is a heck of a lot of nickel and dime items at a garage sale. I don’t want to pay even a quarter more than I have to. To be honest, I very much wish I could afford to just buy the ticket myself and donate the fare, but right now I just d

Breathing: Better in the morning, but then had to use the abuderol inhaler this afternoon. This evening I swam for 45 minutes with little trouble though, but I went after dark when it was cooler. Meds: took everything but the flonaise Diet: one muffin, one diet Dr. Pepper, ham and cheese sandwich, one hamburger (but I threw away the bun, didn’t get any sauce on it, and just ate the meat patty, pickle, lettuce and tomato slice), one cup soft serve ice cream (bad, but man, it hit the spot when it was 104!) seven bottles water and two glasses ice tea.

I got an e-mail from Kevin this morning. It looks like we’ll be able to do the repeat of the pulmonary function tests at NIH as an outpatient while I’m in town to go to the Genetic Alliance meeting for the HPS Network. Yeah! It isn’t that I don’t think KUMed can do a simple pulmonary function test. It’s just that if I do it there, I won’t get in for another month, and if the result is under 85 I’ll just have to do it again at NIH anyway. This way we can cut to the chase and find out if I’m in the ball park for this clinical trial. This darn FVC of 69 has been hanging over my head, especially this week with all the heat and humidity. I’m really noticing an impact on my breathing – as opposed to the usual summer misery that comes with heat. The other great thing about this arrangement is that I’ll have the test on Thursday, and then be with Donna and Ashley, and probably the Washington, D.C. HPS gang for the conference. So, I’ll have some support should things not go well as opposed to b

I haven't had time to write these out, so I'm catching up. The Kevin Report July 17 Breathing: so/so – Kevin, it’s damned hot here in Kansas! Add to it a lot of humidity, and well, it’s messing with my breathing. I’m pretty okay as long as I stay inside, but when I try to do anything physical, like laundry, or working out on the Gazelle, I’m huffing and puffing more than ordinary. Meds: Took them except the flonaise, which I’m avoiding temporarily because of nose bleeds. Diet: Not good – one bagel (worked catered breakfast because of a big meeting) one tacoesque creation from the taco bar they had catered for the meeting at work, one diet coke, one sprite, two bottles water, one glass of very good white wine at the dinner meeting with all the consultants at Lidia’s, one plate pasta sampler, one piece orange chocolate cake, and I have no idea how many glasses of water because the waiter kept refilling it. It was a lot over the course of almost four hours. I was really feeling de

Why should money be spent to research ultra-rare disorders? Wouldn’t you get more bang for your buck if you spent it on diseases that affect millions instead of just a few hundred people? While no one has ever said this to me directly, in the course of public debate about where money should get spent it inevitably comes up. Why should, after all, the National Institutes of Health spend a few million researching Hermansky-Pudlak Syndrome? While the press release below has nothing to do with HPS, I’m posting it because it’s a perfect example of why greater humanity is getting a good return on investment when it comes to HPS research. Rare disorders can offer clues that might be overlooked if only the run-of-the-mill diseases were studied. NIH is learning all sorts of things about several medical problems from its research on HPS. They’re learning about protein trafficking errors, something that can play a role in a variety of disease processes. They’ve already learned quite a bit about b

The following is a story that ran in the Hartford Courant, as well as a number of other McClatchy papers. I actually saw it a few weeks ago, intended to save it, and then spaced it off. It re-appeared today in my Google Alerts. I didn’t post this article to the Hermansky-Pudlak Syndrome group because I really wasn’t sure everyone was up to talking about this issue. I thought part of the group would find it depressing, although personally I find it quite hopeful. It hit home with me because several of the points made really match up with what I’ve observed of the experiences of HPS friends who have become very ill, or even died, of HPS. First, life expectancy predictions are often wrong. With good care, lots of support, and things to look forward to in life, lots of people are able to battle their disease process longer than anyone expects. The second thing that really stood out for me was the point made that many people survive hospice because with quality intervention, their health ac

This morning I logged onto the blog and had to laugh. In case everyone hasn’t noticed from The Kevin Report, I eat a lot of chicken. Why? Well for some reason, red meat is harder for me to digest. And in the Midwest, fish is expensive and a treat. I do sometimes eat pork too. Anyway, this morning I noticed that Google had noticed my eating habits – there was an ad for chicken! HA! Other quirky events – last Friday my company sent out a policy on blogging. It included guidelines for both work-related blogs as well as our personal blogs. We were tactfully reminded that we can held responsible for libel should we choose to negatively blog about our employer. And we were reminded that sharing proprietary information was an offense that would have you looking for another job. If big brother is watching, not to worry. I know who signs my paychecks! (And, by the way, I took media law too and libel isn’t just writing stuff people don’t want to hear.) This did, of course, spark my interest. Wh

Breathing: so/so – I got very winded walking to church, which is about six blocks from my house. I was carrying a load of cookies for coffee hour though. It was also very hot (flirting with 100 degrees) and very humid. Later in the evening I walked about 14 blocks and was breathing heavy, but not as bad as in the morning. Meds: Took all of them except the Flonase. I had two nose bleeds, which is usually a sign it’s time to lay off the flonaise for a few weeks. Food: It was bad Kevin. Three cookies, chicken and potatoes, seven glasses ice tea, four glasses water, cheese enchiladas with rice, two diet cokes. Can we say carbs? I need to go to the store.

This article appeared in “The Northender,” a local paper in Oyster Bay, New York. Oyster Bay is home to the Hermansky-Pudlak Syndrome Network, and its founder, Donna Appell. I can’t say enough about all that Donna has done to push Hermansky-Pudlak Syndrome research and to be there for the affected families. Someday I really want to tell her story on the blog, but she’s always so busy that we really haven’t had the chance to sit down and record it. It’s an amazing story! But, for now, its nice to know that someone besides us recognizes what a great advocate Donna really is – KUDO’s Donna! TOB Announces “Women of Distinction Awards” Town of Oyster Bay Supervisor John Venditto has announced the winners of the eighth annual Town of Oyster Bay "Women of Distinction" Awards, celebrating unique achievements on the parts of women who live in the Town. "A distinguished awards committee, once again, had the difficult task of selecting exceptional designees as the 'Women of Dis

Breathing: fine, but I didn’t do much. Kevin, it’s hot! And I’m having ostomy issues – trying not to move around too much. Meds: took them, still need to get refills, but I’ve still got a day or two left Diet: It was bad! Two slices pizza and a salad, two diet cokes, one real coke, two pieces of pizza, three glasses blueberry pomegranate juice, one glass water.

Thank God It’s Friday! (Well, actually it’s Saturday, but I fell asleep before I got this posted.) I don’t think I’ve been so happy to see a Friday in a long time – and I look forward to Fridays all week long. This was just a rough week. All week I never did hear from my doctor about the pulmonary function test. I have no idea if anyone has sent the final report to Kevin, or what Dr. Kennedy even thinks of the results. When I called for the third time, I was told that it takes ten days to process test results – and not to worry, if it was an emergency the test results are reviewed daily and someone would have called. The pulmonary lab told me my doctor would have the report by late Monday. That was five days ago. The only way a PFT would be an emergency would be if I were upstairs in the hospital on a vent or something. It isn’t that kind of test. But, I would have thought that if someone had noticed my FVC had fallen from 94 to 69, they might have wanted to have a conversation with m

Breathing: fine, as long as I stayed inside. We had an air quality alert day, and when I walked outside I knew it. It was 94 degrees with a heat index of 106. Yuk! Meds: took them (need to get refills) Diet: It was a bad day. I had Bourbon Street pasta with chicken for lunch, two diet cokes, one latte (with skim milk), two chocolate chip cookies, three glasses of water, three glasses of blueberry pomegranate juice, and three pieces of pizza. The pizza really blew it. Lots of cheese and meat! Naughty!

Breathing: just fine – but didn’t do much today but sit in front of a computer. Meds: took them Other developments: Feeling really tired Diet: ice tea, salad (but it did have fried chicken bits on it. I asked for grilled), three glasses water, Bourbon Street pasta with chicken, one glass milk, two glasses blueberry pomegranate juice, one diet coke.

I’m feeling like a bit of a ditz lately. I’m so distracted! Yesterday I had to leave work at noon because my ostomy pouch sprung a leak. It was very irritating as it happened right before the entire office was about to leave to meet our former art director for lunch. I was anxious to hear all the news, and couldn’t very well explain to everyone why I suddenly couldn’t go. I called three cab companies before I found one that had shorter than a two-hour wait. It cost me $20 to get home, and I had to wait for an hour praying that I’d get out of the office before the leak became apparent to everyone. I worked on my New Orleans story for a while, but the story isn’t going well. It kills me. It’s a great story. I have notebooks full of notes. But, my mind is so distracted by the rest of my life that I’m not feeling very inspired, and so the story reads dull – or maybe I just feel dull about it. Then today I went to lunch with our intern and as we were paying the check, I felt another woosh.

Breathing: Okay – walked 14 blocks this evening with little trouble and did 20 minutes on the Gazelle. Meds: Took’em Other developments: Mild joint pain today in my fingers, wrists and ankles. That’s been much better, and today it wasn’t bad. It was just enough to be annoying. I was very tired today and fell asleep for several hours this evening. I haven’t been sleeping that great though. Diet: 1 diet coke, the rest of the enchilada and rice from yesterday, a turkey, lettuce, tomato wrap with ranch dressing, 4 glasses ice tea, 2 glasses water, 1 glass blueberry pomegranate juice.

Just a few updates on a few projects, for those keeping track. First, the AdSense experiment. Well, I think I’ve figured out whey they won’t tell you what you’ll make. They really don’t know. It seems the ad spaces are sold at auction, so it depends on what the advertiser is willing to pay. So, that’s why one day a banner will make you 50 cents a click, and the next day not even half that. I’m not sure how the page impressions figure into this project. Perhaps you’ve got to hit a certain number before they pay you anything for those – but so far I haven’t seen a penny for page impressions. It’s all click throughs on the ads. So far, since July 3rd, we’ve made $7.42 for HPS – but the number of ad clicks has only been one to two a day for the last few days. I have seen improved ad circulation, which I hope means AdSense isn’t having any trouble selling the space. The Oprah Watch – still e-mailing Oprah daily, and still watching. What can I say – we’re just not as exciting as wife swappin

Last night I got a nice mental break from life. Tina J., Megan and I all met up in front of Homers. We got take-out from the nearby Mexican restaurant and I sort of invited us to share a table with a complete stranger named Joe. He turned out to be a nice guy and to be honest, I think he was grateful for some company. We were entertaining to say the least. Every Monday my neighborhood coffee house has a bluegrass/gospel/60s hippie music jam session on the porch outside. Tina, Megan and I all love bluegrass. I think we stirred up the typically stoic Homers crowd by clapping to the beat and singing along. Hey, it’s a jam session folks! We did get sort of a nice harmony going to “I’ll Fly Away” although I only know the chorus. Afterwards we went back to my apartment and amused ourselves by watching Tina’s guide dog go bananas in my living room. I guess he’d had a long day, so when his harness came off – look out! He always does this at my house. He runs as fast as he can in a circle aroun

Breathing: so/so – it was very humid in Kansas City today/yesterday. There were times of the day when I wasn’t really out of breath, just aware of my breathing, aware that I was working harder at it. I walked to a local hangout last night four blocks from my house and was completely winded by the time I got there. That’s not normal! I just did all that walking the day before! See what I mean? I puffed some abuderol – but friends showed up and we all went back to my place, so I didn’t walk home. Meds: Took them, plus the abuderol Exercise: A friend gave me an exercise ball for my birthday so I got out the book and played with it for a while – not much a work out really. My fault. Diet: Okay, not such a great day. Never ate the sandwich from the night before, so I was starving. Had an egg McMuffin on the way to work. Salad and large ice tea for lunch. Two bottles of water in the afternoon. An enchilada and rice for dinner (took half of it home) a soda (bad, bad Heather) and a latte (with

Breathing: pretty good. I did breathe heavier than usual while I was walking today, but I did a lot of walking. Some coughing, but nothing major. No dog barking, gut shaking kind of cough. Just a little airy cough. Meds: Took them, and I’m about to go and take my Singular now – I promise! Diet: chicken and rice, 1 Pepsi (the real thing, they were out of diet), 1 ice tea, 2 glasses cranberry juice, 2 glasses water, two cookies (small). I forgot to eat dinner, so I’m debating about eating a sandwich. I don’t like to eat this late.

My brain is returning to normal today. I don’t know what I’d do without all of my HPS friends. Several of them called or e-mailed yesterday, and then again today, just checking up on me. They all know exactly how I feel. I don’t have to explain a thing, and no one says “don’t worry” because they know we all worry. I woke up still in that channel changing state of mind – unable to focus, decide what I wanted to do for the day etc. Then Sheena called and it just sort of settled me down for the day. But, I missed church – again. Who decided that church was supposed to be on Sunday morning anyway? Yeah, yeah, yeah…spare me the lecture. I really should have been working today, but decided I needed some exercise, so I went to run some errands. I ate lunch at Casa Paloma, the Mexican grocery that provided the chips and salsa at the trivia tournament HPS fundraiser. I try to eat there when ever I’m headed in their direction because they’ve been so supportive of my HPS fundraising. They even ha

Breathing – pretty normal, but I was a lazy slug all day. Meds. – took them all Diet – two pieces of chicken spinach tomato pizza, two diet cokes, three glasses cranberry juice, one bowl strawberries (no sugar, they didn’t need it) and three glasses ice tea.

Kevin has asked me to start keeping a breathing diary to help us sort out how I’m really feeling. Since Kevin asked, I’ll do it. If Kevin says jump, my answer is how high? But to be honest, I’m not wild about the idea. I think about HPS every day. I have to really work at not obsessing on every little health-related tweak or I’d drive myself insane. So, you’ll start to notice little updates on this blog. Ignore them if you like – I’m not keeping three journals (this one, my personal one and now a third.) As for how I’m doing today, after yesterday – well, I don’t know how to describe it. I have the attention span of a nat. It’s sort of like having emotional hives. No matter how much scratching, cream or changing of position you do, there’s no getting comfortable. So you just squirm around trying not to get too uncomfortable in your skin. Yes, yes, I know, the test is probably wrong. And I really wish I could just completely shrug this off. But I can’t, at least not today. So, I keep sc

I’m feeling grouchy. Today was the big day – pulmonary function test day. I’d done a pretty good job of not getting anxious until the night before, but amazingly, I slept pretty good. I managed to hold it together through my morning interviews, and then it was off to KU Medical Center. I said a bit of a prayer before leaving home (since I had such mixed feelings about this test) and just sort of left it all in God’s hands. Whatever was meant to be would be. I arrived at the pulmonary lab, which is a bit of a hike across the KUMed campus up on the fourth floor of one of the older buildings. The tech was very nice and I puffed, and puffed, and puffed and then I puffed some more. I was starting to get a bit worried because I was getting dizzy from all the puffing. At the end the tech asked me when I was going to see Dr. Kennedy again. I explained I was having this test done for NIH, and didn’t really have an appointment planned – but I’d make one if that’s what I needed to do to get the t

And here's Elsie! This photo was taken at the 2006 HPS Family Conference.

Picture of Elsie to follow - blogger won't let me upload pictures - AGAIN! One of the challenges of having an ultra-rare orphan disease is encountering new doctors who know nothing about your disease, about you, and often are completely befuddled about how to react when you show up in their exam room for the first time. Last night a very good HPS friend, Elsie, called to tell me about her recent trip to a brand new doctor. “He didn’t believe me when I told him I had Hermansky-Pudlak Syndrome,” she said still somewhat irritated. “Your kidding,” I answered. What makes this even more shocking is that Elsie is the queen of HPS outreach. She’s like an evangelist sharing religion because of her drive to make people aware of our disease and get people properly diagnosed. Elsie understands better than anyone else why it’s so important. Last year Elsie’s brother died of the pulmonary fibrosis of HPS and Elsie’s lungs are also affected by fibrosis. She’s a woman with motivation. HPS disprop

These are the guys from the Desire Restaurant and Oyster Bar on Bourbon Street mentioned two entries ago. I've had some trouble uploading photos. I had to reduce the size so much on this one, that the quality isn't real hot. But, here they are - two of the nicest guys in the world who never got me to eat an oyster! Grin!

Today I finally felt relatively normal. The bleeding finally slowed down and my energy levels were more up to where I’d like them to be. I can’t help but feel a bit frustrated that two of my precious four days off I spent mostly laying around on my couch or in my bed. Today, however, I tried to make up for lost time. I cleaned out my fridge and freezer, went to the grocery store, did a load of laundry, dusted the kitchen, dining area, living room and bedroom, cleaned out all the kitchen cabinets, and mopped the kitchen floor. I still have to vacuum, and the bathroom is only half clean. The fumes got to me before I could finish it. I didn’t even touch the study, probably the worst room in the house. I also cooked a dinner, and cleaned up after that too. For me, that was a pretty eventful day. I’m still very awake though. I’ve always been a night owl, and given a few days off it’s funny how I automatically revert to being a creature of the night. I’d finish the vacuuming, but I’d wake up

Note: Blogger will not allow me to upload the picture. I'll try in a separate post. Never has a city been so happy to welcome tourists as New Orleans. It’s not completely uncommon for convention and visitors bureaus to undertake a “welcome” campaign when a very large event is in town. They meet with local heads of the hospitality community so that everyone is on the same page and has the same information about the incoming group; hold special “being nice” seminars for waiters, clerks or taxi drivers to tell them about the event coming to town; and they remind everyone how important such events are to maintaining hospitality jobs. The idea is to make the visitors feel as welcome as possible. You can bet that the New Orleans Metropolitan Convention and Visitors Bureau was no different when the first major trade show since Katrina came to town. The city pulled out all the stops to welcome the American Library Association. Yes, they held a special bash for hospitality workers at the co

Hermansky-Pudlak Syndrome needs some blockbuster press coverage – and we need it now! To be honest, we’ve got to pick up the pace on the recruitment for the protocol. The thing about HPS is most people that have it have no idea. I know people pass away and never know about it. Most doctors either don’t know about it, or it’s some vague memory from medical school and they often don’t remember all the facts right. The way many of our families get diagnosed is through their own research. Their child exhibits too many bruises etc. and they get online and do some of their own research. Or, they read about HPS in an albinism-related publication or hear about it on an albinism-related listserv, and recognize the symptoms in their own life. The trouble is not everyone with albinism belongs to such listservs, or gets information from NOAH. I realize promoting our protocol wouldn’t make an interesting show for Oprah, but so much of the HPS story really would. The tribulations of trying to get pe

Regular readers will notice advertisements just appeared on this blog. Why? Well, it’s an experiment. I don’t know if they’ll stay or not. I’m averaging about 400 to 500 user sessions a month on this blog – a number that isn’t exactly going to rock the blog world, but it isn’t that bad either. I’d hate to miss out on a chance to make a little money for HPS, so it’s my intention to donate any proceeds from ads on this blog to the HPS Network. The only caveat I’d make to that is that if I lose my job, or am suddenly unable to work for some reason, that may change. At this point, I have no idea how to estimate earnings from this experiment. Google won’t come out and tell you what they pay, which frankly irks me, but when I read the contract I found that I could pull out at any time for any reason. So, if this makes barely anything, the ads will disappear. All I know is earnings are based on some mysterious formula that combines impressions with click-throughs. So, we’ll see what happens.

Attention readers: This post contains medical information that may not be appropriate for all audiences. Read at your own risk, or with parental guidance. It’s nearly 1:00 am and I’m wide awake. I’m also feeling better than I’ve felt all day. But, I’m afraid to go to sleep. For women, one of the challenges of having Hermansky-Pudlak Syndrome is that a bleeding disorder, and having a female cycle, doesn’t always mix. I can go months and months and things are relatively normal. And then suddenly I can have a cycle from hell! While this isn’t the worst month ever, it’s falling into the cycle from hell category. I’d been looking forward to my long weekend for weeks. I’d planned to get all the household things I never have time to do finished. So today I got up early ready to sink into my filthy house and get things ship shape again. But, it seemed I could never kick it into high gear. I’ve felt horrible all day, and it’s all female issues I know. The morning started off with an intense hea

I’m not having a good day. There are times when I find myself in a funk, and this is one of those times. It isn’t even always related to what’s going on in my life. Perhaps it’s a chemical thing, or maybe when things are bad all my energies go to holding the world together, so when not much is going on, all the emotions that I have to hold back in the heat of a crisis come leaking out. Today my mom called. She’s been moving from one part of Germany to another, and was going on and on about how beautiful and quant her new surroundings are and how I should come over some time and visit her. I haven’t been back to Germany in years. Soon she’ll be retiring and my chance will be gone. “I don’t think I can come,” I said. There was a sigh from the other end of the phone. “For starters, I can’t afford it, and I can’t see ever having enough days off from work to make the trip.” I’d have to take two days for getting there and back alone. “I was just suggesting it,” she said. I could tell from he