Living on the frontlines

Just a warning for the guys – this post contains health information of a feminine nature. I know the HPS guys know exactly what I mean. Read at your own risk. This weekend wasn’t what I had in mind. I had slated it as a “restful catch-up weekend.” No adventure fitness, no work obligations (at least not too many), no real commitments and maybe a trip to the mall in search of a few fall wardrobe items. My body had other ideas. Friday I felt excessively tired. I woke up, poked my big toe out of the covers and rolled over with a moan. I wasn’t ready to get up. I was warm and sleepy and wanted nothing more than to stay put. But, the clock showed that I was already running a half-hour late, so I groggily went about the business of getting ready for work. (I’m loving this new haircut – done in five seconds flat!). Even after my shower I felt overwhelmingly tired. I took my temperature – normal. So, off to work I went, falling asleep on the bus. By about 1:00 pm I was fighting to stay awake at...

Last year the HPS Network got a new office, and while I was there I took a few pictures. But, to appreciate what you’re looking at, you’ve got to know the back story of the HPS Network office. Until last year, the HPS Network office was the top of an old dining room table in Donna Appell’s basement, right there in the family room with the TV and the laundry. Donna jokes about how many times she’s received calls from people who seem to have the impression they’re calling an “office” – you know, a place with a receptionist and desks. All the while, there was Donna, answering questions about dense bodies and plotting political strategy while cutting carrots for her family dinner. We’re a small operation with massive growing pains. A few years ago the Appells decided to add on to their house. Top of Donna’s wish list was a real office, with desks, a server, phones and a door. As has been the case since the very beginning of the HPS Network, the Appells have covered all the overhead of bui...

Dr. Melissa Merideth probably doesn't realize it, but she's got a regular fan club among women with HPS. Sandy brought the following honoring of Dr. Merideth to our attention. Kudos Dr. Merideth! For many years women with HPS were clamouring to have their unique needs met. Many of us have complications with prolonged cycles that can last for days and days, heavy bleeding (both of which can just make you feel wiped out!) or questions surrounding child birth. When Dr. Merideth arrived at NIH and started working with the HPS patients, it was a Godsend to all of us, as well as our doctors back home that were often somewhat puzzled as to what to do with us. Dr. Merideth has been a frequent presenter at the HPS family conference - and while the sessions are usually small, they are also requested over and over again. (We like them small so women don't feel anxious about asking questions.) Already I've had several e-mails wanting to know if Dr. Merideth would be at this year...

Wednesday I missed one of the HPS events of the year – our first foray into lobbying in Washington. I had the privilege of lobbying several times for the National Federation of the Blind when I was in college – but it wasn’t just the hob knobbing on the Hill that I missed. It was the opportunity to see some of my HPS friends. It’s hard to describe what a bond the HPS community shares. We call ourselves a family and it’s so true. We love each other. We disagree about many things such as politics and religion. We sometimes fight with one another. But in the end we all depend on one another and when I’m with my HPS family, I feel like I’m home. After a hard day of beating the pavement in Washington, our lobbyists attended a swanky dinner to celebrate the 20th anniversary of the Genetic Alliance. Again, while I’m sure the food was good, I was distressed that I missing out on a very special HPS family moment. As the frequent readers know, Candice and Crystal (twins with HPS) were honored fo...

Yesterday I missed a huge event - and it was killing me. I'll blog more about it later when I've got more time, but in the meantime, here's a press release about it. There were several HPS'ers that took part in this event, and Candice and Crystal Sipe (mentioned a few posts ago www.angelsinvoice.com ) were honored. WASHINGTON, Sept. 27 (AScribe Newswire) -- Genetic Alliance brought together today more than 250 advocates, researchers and clinicians in the largest ever celebration of the genetic advocacy community. An exhibit at the National Geographic Society in Washington, D.C., showcased leaders of a variety of organizations -- from little children who have been spokespersons for a disease to founders who have gone on to build research enterprises. The 20th anniversary celebrated an inventive, driven, inspiring community. "We are celebrating the best of the human spirit: the leap across the threshold (and sometimes canyon) from dire and devastating diseases and c...

Hey long lost Jennifer - if you're still out there - I've been trying to e-mail you at the address you left but it keeps bouncing back to me. E-mail me at: hkdawn@yahoo.com . I was so excited to see your message!

Here's a picture of the HPS Board of Directors meeting at Donna's house and discussing a few things over dinner - a dinner that Donna cooked!!