Living on the frontlines

Today was a day of small victories. It’s hard to believe it has taken so long to rebuild life since I had to leave work last October. I think I should finally have my new home office up and running just about a year to the day that I had to leave work last year. I never imagined when I left it would take this long, or that I’d still have so many things in life up in limbo. Today, however, the authorizations were done (so I’ve been told) for my new desk and some new equipment I hope will get me working again, at least part time. It has honestly taken this long to fight all the battles with insurance companies and social security and vocational rehabilitation services (and now Medicaid). There are earnings criteria, waiting lists and lots and lots and lots of paperwork. In the meantime you pretty much have to wait and wait, and wait. If you try to buck it up and look for small ways to overcome and show any productivity, they essentially hold it against you. One thing I’ve observed throug...

Molloy College HPS Fundraiser Dates: Oct. 17 – 18 1000 Hempstead Ave. Rockville Center, NY Meghan Miles, a freshman at Molloy College, and her friends are organizing an HPS benefit musical called “Songs for a New World” as part of the Molloy College homecoming weekend. The concert will be held Oct. 17th at 8:00 pm and Oct. 18th at 7:00 pm. Tickets will be $20 each. Meghan is the daughter of Brian, a.k.a Batman at last year’s conference. For more information contact the HPS Network.

Blogging about some of the ways that having a chronic illness has affected my life seems so uncomfortable. I think the problem is in day-to-day life I try not to focus on it. When you do, the word “should” tends to come up a lot, and that’s probably one of the most dangerous words in the English language. I can use that word a lot. I should have achieved x,y and z in my career. I should be married. I should own a home and have children. I shouldn’t be forced to live in near poverty to ensure I can get access to reliable healthcare. I shouldn’t have to constantly worry about the many things I worry about. Should, should, should – the list could go on and on. The thing is nothing is achieved by dwelling on the way things “should” be. The fact is, things are the way they are. You have a choice every morning. Are you going to focus on what should be, or find something about what is that you can be happy about (yeah, I know, some days that’s harder than others.) That isn’t to say one should...

This afternoon, while laying in bed with a particularly nasty headache, I was listening to a show on NPR called “Fresh Air Weekend.” (I listen to Fresh Air during the week too.) The last interview of the program was with two women, both of whom had been diagnosed with cancer in their late 20s, and both of whom have been published about their experiences living with cancer at a young age. While much of the cancer life is very different than the HPS life, I could identify with much of what they talked about. Having a chronic illness as a 20 to 30, even 40-something is just different. It takes on even more dimensions when it’s something so rare. I’ve been thinking a lot lately about living with chronic illness. It isn’t that I’ve been more upset than usual, or more depressed than usual – it’s that I’m trying to think of all the things I should be documenting to tell this story that have by now become so routine I don’t even think about them. Many of you will remember the film crew from St...

Thanks for all the prayers for Maria. She's home and taking medicine and recovering. She's trying to get a timely appointment with the transplant coordinator to start the ball rolling. They want to put her off for several months. The thing is, it takes a while to be evaluated for a lung transplant. Let's pray she's able to get in sooner.

This week we added another person to the HPS patient registry. That puts us at 40 more HPS'ers to find in this year's Hundred People Search (HPS) challenge. Keep up the great work everyone - we want to make sure no one goes undiagnosed or is left behind as someday better treatments are found.

Regular readers will remember seeing Maria on the blog a short time ago. She's one of our HPS'ers currently hoping to be listed for a lung transplant. I think we're now up to five that I know about, either directly or through the grape vine. Maria has developed a high fever and is on her way to the hospital. When your lungs, and indeed your body, are already so fragile, these things can be serious. She asked us to post a prayer request - and of course I'm happy to do that! Hopefully this is just a little bug that can easily be knocked out quickly and she can get back to the transplant trail.