Living on the frontlines

I haven’t had too much ostomy trauma in a while, so I guess I’m due for a dose. This evening I went to the Tuesday night service at church. I like it much better than the Sunday service, and I’m usually much more awake. Grin! But, this week Pastor Pat was out of town, and so we were left to watch a video. It was actually quite a good video. It was the story of the crucifixion from the point of view of one of the Roman soldiers. The trouble was we were watching it on a TV perched on top of one of those tall TV carts they use in schools. I couldn’t see a thing. One of the ladies sitting in the front graciously offered me her seat and I accepted it. As the movie started, and I was trying to watch it with my monocular, it became clear this wasn’t working. The monocular was getting a lot of glare from the screen, and there’s no way my arm was up to holding the monocular up to my eye for an hour. So, never being afraid to reposition myself as needed, I pushed a chair right up in front of the...

I’m losing it. I feel like I’m living in a college dorm with a bunch of teenagers. My next door neighbor, a guy in his 40s, recently invested quite a bit of money in a large TV, with large speakers, and then a large sound system which he apparently has now wired throughout his apartment. The problem is this is an old building. No one apparently knew what insulation was when it was built. Whatever he does for a living, he does from home. (I think he’s in sales of some kind.) When I’m working from home our studies or extra bedrooms back up to one another, and I can hear him on the phone. He can hear me too – and sometimes we talk through the wall. Given this fact, you think it would have occurred to him that his new sound system might be problematic with the neighbors. Apparently not, however. At any time, day or night, the TV or the stereo goes on and no matter what I’m doing, I can hear it. I can’t sit and watch a TV show in my own living room without this base going. I can’t sit in m...

Every year the HPS Family Conference has a theme, and usually there's a theme song. Candice and Crystal Sipe suggested this year's theme song - and the lyrics couldn't be more perfect for the HPS Network. Isn't it funny how sometimes you can find a song that has nothing to do with what you're thinking of, and yet the lyrics match so perfectly? I've been wanting to add a feature to this blog that would allow me to feature audio files - but I haven't been able to find a way to host music without major copyright headaches. So, I can't post the song - but as many of you know, there are ways to find such things online. Check out this song. Artist: Richard Marx and Donna Lewis Lyrics Song: At the Beginning We were strangers Starting out on a journey Never dreaming What we'd have to go through Now here we are And I'm suddenly standing At the beginning with you No one told me I was going to find you Unexpected What you did to my heart When I lost hope Yo...

There are some days, like today, that I want to shout to the universe – enough! We need to cure this disease, and we need to do it now! Today was a great day actually. Work decided to move our magazine press deadline back to Friday. We share an art director with another magazine, and the other magazine was late getting to press so he hasn’t even started to do layout for our magazine. That took some of the pressure off of me too. It means that I feel pretty confident I can get everything done next week without too many late nights. It also meant I didn’t bring home much work. Yes, I’ll probably log onto the work server Sunday night and get my ducks in a row so I can hit the ground running Monday morning – but I haven’t spent the entire weekend fretting about the magazine. That meant I could concentrate on fretting about HPS issues. Grin! The HPS Network is selling Christmas CDs this year as a fundraiser. I know how important fundraising is to us – and how desperate we are for funding. B...

This past week was the two month anniversary of my being in the clinical trial to investigate the use of Pirfenidone to treat the pulmonary fibrosis of the Hermansky-Pudlak Syndrome type of albinism. Yeah! I’m doing great. I’ve had a rough month with a bit of stomach flu and ongoing sinus troubles – but I don’t think either of those is related to the study. They’re more like annoyances. My stomach has been a bit more sensitive, it seems, since starting the drug trial. The first four weeks I had pretty much non-stop diarrhea. As soon as it would start to improve, it was time to up the dose and the runs would return. Now, that is much improved, but I find my stomach is very sensitive to eating any veggies or fruits. Eating an apple or a salad pretty much brings back the runs. So, I’m having a little trouble eating a completely balanced diet – but it isn’t too bad. It seems like I’m eating a lot of meat and dairy. Actually, I ate a salad yesterday and it wasn’t too terrible. I don’t get c...

Donna Appell, Founder and President of the Hermansky-Pudlak Syndrome Network, has been busy these past few weeks too! I know everyone knows Donna works hard, and that we all appreciate her – but sometimes I wonder if everyone realizes just how hard she works on our behalf. Not only is she caring for Ashley and her two elderly parents, but in the past two weeks she’s been hop scotching across the country to attend various medical meetings of critical importance to keep the research on HPS going. First she was off to the public advisory meeting for the Heart, Lung and Blood Institute at the National Institutes of Health. You would think that since HPS is mostly a blood and lung disease, we’d be a natural fit with this institute. But, actually, our cause was taken on years ago by the genetics branch at NIH. Even so, as our research grows and our drug trials continue, we need the attention of the Heart Lung and Blood Institute. Serving on a public advisory board not only gets the name of H...

Thanks for all the well wishes and sweet e-mails. I am feeling better, but very, very tired. That’s party why I haven’t been posting. The medicine I’m taking to help the sinus issues makes me groggy, and when I’m not feeling groggy I need to be focused on my job right now. The magazine goes to press next Wednesday, and the pressure is heating up. If I can just get through tomorrow okay then I can at least get my battery recharged over the weekend. It’s going to be another HPS weekend. There’s lots to do to get ready for the conference. The invitation letters to the doctors need to go out ASAP, so I’m helping out with that. There are a number of other things too. I need to follow up with the doctor in India as he should be back in his office. I’ve got quite a list. Grin!