D.C.

The always beautiful Union Station, Washington, D.C.

I'm a little behind in blogging... *sorry* I really do love writing and keeping you up on the latest happenings of the Catboogie. So I hope it isn't too discouraging.

Week before last I had to go to D. C. for some work training on Monday and Tuesday. I decided to ride the train up - it's about six hours from Raleigh by train; 4.5 to drive; and I hate flying, so it seemed like a good option. The ride up was smooth although I was a little panicked because I'd left the office on Friday in such a haste that I forgot to print out the information about the meeting time and place! I had emailed various people asking, but they were not answering over the weekend. I thought I figured out where the training was held; and I thought it probably started at 9, but decided to arrive at 8:30 for good measure.

So let me back up a bit. The hotel that was booked for me by our national office was called Hotel Rouge. Usually when one goes to D.C. for work they stay near the World Office proper, which is in Arlington, VA, so this was truly a treat. The Hotel was near Dupont Circle, a sort of newishly gentrified part of town (by newish I mean the last 20 years). It used to be sort of ghetto but has since turned into a thriving gay and hipster community. I was right at home. :)

I checked into the Hotel Rouge about 4 pm on Sunday. I quickly got settled and decided to set out for the National Gallery because I had never been there and they had an exhibit of Allen Ginsburg photographs. I have always loved the beats so I was super excited about it. I browsed through the main gallery, checked out the Ginsburg photos (which I loved!) and then crossed the street to the Sculpture Garden - a block large exhibit of different modern works set along a gravel path.

When I was done with that, I decided to head back into the vicinity of where I was staying and stopped at a restaurant near Dupont Circle and got two appetizers and a couple of beers. Fortunately I was not hungry because of the incredible heat - they were the smallest appetizers I have ever gotten!

The next morning, I got up and arrived by 8:30 at the alleged meeting place only to discover a locked door and a receptionist downstairs who had no clue of what I was talking about. Fortunately, around the same time, I received an email from the training coordinator who informed me that the training actually did not start until the following day. Not quite sure how that mistake happened! Pretty embarrassing, actually. But in any case, I returned to my hotel, changed clothes, extended my stay an extra night, and then changed the return ticket for the train.

The downside of the mix-up were obvious: I'd messed up the dates of my training, I needed more clothes and would be slightly short on a couple of my meds. But the good side was that I had an entire unexpected day of sight seeing in D.C. I decided to go to this new place called Museum - a museum of news. It sounds kind of weird, but it was really cool. Some of the highlights: part of the Berlin wall, part of one of the World Trade Center towers, Ted Kaczynski's cabin (the actual one!), among many many other cool things.

Section of the Berlin Wall

Ted Kaczynski (aka The Unabomber's) Cabin

After that, I headed to Madame Tussauds wax museum. I had never been and thought it would be a good way to kill some time so I didn't get stuck riding the subway during rush hour. All in all a very good day in the city.

Waxen Obamas

Tuesday morning, my training began. It was really good - we were introduced to TNC's new website platform, and talked some about web writing in general. That night, they provided dinner for us at a restaurant near there. No time for sight seeing that day. We finished off the training the following day at noon. I made my way back to the hotel, got my stuff, and took a taxi to Union Station. I love the feeling of just being in the city - you can pretend like you live there, fantasize about the urban life, and no one knows differently.

The train ride back was more crowded than the ride up had been. Every seat in our car was taken - many people were aboard for a long haul (the train runs NY to Miami). Because of various delays, I was two and a half hours late getting back to Raleigh.

It was good to be home. It was even better that I had the next day off work to just chill, unpack, rest up and regroup. Only seven days until Todd and I would set off on another trip - to Cleveland to see my dad for the Fourth of July. More on that to come.

Drug Development Pipeline

This is something I like to take a look at from time to time - the drug development pipeline for CF medications. The two things that I am most interested in are VX-809 and TIP (Tobramycin Inhalation Powder). VX-809 is the "gene therapy" discussed in relation to CF (specifically for my mutation). It could be very very promising, but who knows how far off it is?

(From cff.org website)

Drug Development Pipeline

The Cystic Fibrosis Foundation has built a dynamic "pipeline" for the development of more new potential cystic fibrosis (CF) therapies than ever before. To treat a complex disease like CF, therapies must target problems in the airways and the digestive system.

In the CF drug development pipeline, there also are promising new therapies designed to rectify the cause of CF — a faulty gene and/or its faulty protein product.

Below is a "snapshot" of those potential CF therapies that are currently in development as of February 22, 2010.

A Musical Confession

Firstly, apologies for so much time passing since my last post. I really do think about writing on here often, but have to balance that with time issues and having worthy content.

I have been doing really well. ...mostly. Actually, the way last week ended, I was thinking I might be headed for IVs, and I was going to take the weekend to rest up and see if I could recharge or if my fate was indeed sealed. During my fairly strenuous Saturday yoga class, I had a new experience - and I ain't talkin' enlightenment, baby! Rather, I coughed up a bit of blood during a sequence that involved a lot of bending over. I realize this might sound horrific to some of you. But it's not all that uncommon in CF.

The trick with hemo, as it's called, (short for hemoptysis) is to know whether the trigger (being in a smokey bar, say, or in this case bending over - which causes a rapid change in blood pressure), is something that just happens to annoy your lungs on that particular day or if it is a sign of infection. Mostly, the latter is true. However, there are some lucky folks who just bleed from time to time. While I thought the incident meant I was headed for IVs, since I was feeling well otherwise, my doctor and I decided to wait a few days and see how things went. And I've been back to normal, which is awesome.

Onto the topic of my post: music. A short musical history of my life would go something like this: The Police were the first band I ever fell in love with their music (thanks to my dad); high school I struggled to steer clear of the hippie music all around me, started listening to Nirvana, REM, U2 and stuff that sounds good when you're high; college brought some branching out, started liking a little jazz, got into Red Hot Chili Peppers, Foo Fighters, Ben Harper (!). In other words, I've been pretty main stream for much of my life.

Another confession: For many years, I had an addiction to shitty radio. Yes, shitty - top 40, one hit wonder, destined for a compilation of songs to one day be sold on a late night infomercial (and yes, I did think about buying one of those too!)

Now that we have that out of the way, I want to say that I have never, ever, with the exception of John Mayer, bought any of the shitty stuff I heard on the radio. I knew that it wasn't good music, but rather just something catchy to listen to and think about how that does kinda sound like that one guy you used to date. Ahh... isn't life funny like that.

Now, fast forward to last December. The CD player in my car had been broken for over two years, and when I was looking for a replacement it ocurred to me that I might like to get satellite radio. Todd was definitely into the idea (hoping also, no doubt, that my taste in music would improve with exposure to more than just my AM/FM radio). So I got Sirius radio. This was pretty much the beginning.

At first, I didn't listen to it much. I couldn't figure out my new radio, and besides, I had a lot of catching up to do on listening to all my CDs. But after a while, I started listening to a couple of stations. And I became interested in some of the bands, looked them up online. I'd go to Amazon and listen to samples of their albums. Then I discovered Pandora and, like its name suggests, things pretty much exploded.

I've been to the local music store three times in the last few weeks. I love browsing the used CDs section - I really hate paying full price for music unless it's something I know I'm really going to like. And I like the thrill of the hunt, and the randomness of what you can come across. It's like this whole thing I'd forgotten about - the total high that comes from finding an album you love, playing it over and over and over, and wanting to share it with everyone you know. There are all these amazing bands I've been missing out on! I have a lot to catch up on.

Clinic

The PFT (pulmonary function test) machine

I had a very busy CF clinic visit last Thursday. All in all I have been feeling incredible lately. I feel slightly less good than I did a couple of weeks ago when I last lowered my Prednisone dose, but I hope that my body eventually adjusts, that I will feel awesome again, and be able to continue lowering my dose. (One of my ongoing goals is to get off it entirely.)

There is a nurse at the CF clinic who has the ability to tell instantly how you are doing. She does this, amazingly, while we patients wear masks that cover up half of our faces. She says she can tell by our eyes. I don't know what her secret is but I have found her to be amazingly accurate. When she asked how I was feeling, I told her very well. She said that I looked very good to her - the best I've ever looked, actually. That was quite a compliment coming from her!

My pfts were pretty much unchanged from my last two visits. That is kind of discouraging because of how good I feel, but when you consider that I have been lowering my Prednisone - which has surely inflated those numbers in the past - it really is a good thing. I believe the cause of my feeling good is:

• haven't gotten sick
• compliant with treatments
  
• exercising a lot
• a supplement called NAC (n-acytelcystine)

The story with the NAC is that I have been flirting around with it for the last couple of years. But it wasn't until the last few months that I started taking it regularly twice a day - and after about a month of that I started noticing pretty significant changes: I often don't feel like I needed to do my mid-day treatment, my exercise tolerance is (pretty significantly) up, my mom commented that I don't have "the CF voice" anymore. I think I have more energy, too, although that is hard to tell with how busy I've been.

But back to the appointment. I am switching to a new brand of enzymes, which I am a little nervous about. But it seems to be going ok. It's been kind of like switching pet foods, I'm adding them in a little at a time to make sure my belly is getting used to them. The reason for the switch was that my current brand is going to be changing names and will not be available for a couple of months; at the same time I am finding it too expensive to buy my special-for-CF ADEK vitamins, and this new company gives the vitamins to you free. My last blood test showed my Vitamin A levels were a little low, so the Dietitian was concerned it's because I wasn't taking enough ADEKs. I personally think it was just a fluke because my vitamin levels have never been low but she wasn't buying it. :)

The other thing that was really good was a conversation that I had with the social worker. I used to loathe the conversations with the social workers as they prodded into my psyche to try to see how "well adjusted" I was living with a chronic illness. This, however, was a conversation mostly about insurance - specifically what I would do for insurance if I lost my job at TNC (please no!) I have long said that I have no second-best option with this.

Turns out it's not as bad as I thought. While the state has abolished the Adult CF program that would help low income people with all of their CF expenses, there is a new insurance in NC for high-risk patients called Inclusive Health. I'm not sure how it works, but for $300-400/month I could get on it. The program does have high deductibles, but also covers more than just CF expenses.

Also, (and this is kind of sad, but also good to know...) I already technically qualify for federal disability (SSDI) since I cycle inhaled antibiotics continuously and my fev1 is below 50%. However, if I applied for that, I would have to not be working in order to plead the case that I'm not able to work. So that is not something I want to have to do. After being on SSDI for two years, one automatically gets Medicare insurance. With my job now, I think I could get COBRA for 12 or 18 months, so there would still be a gap in coverage. But hopefully the Inclusive Health would be around then to help with that.

The other thing is that UNC itself has programs both for hospital/clinic visits and for prescriptions. So the worst case scenario, I could get all my care there free (I already qualify for the hospital/clinic part of this program b/c of my low income and so all of my co-pays are waived) and could go there to get my medications once a month. Not ideal, but certainly a nice safety net to have.

So while all of that stuff is totally no fun to think about, at least I feel like I have a good handle on it. And it's definitely less scary now that I know what my options would be. Now to hope that I never need to use any of them! :)

Revisiting old goals

"It's never too late to be the person you wish you were."

I watched two documentaries last night, I.O.U.S.A. and No Impact Man. I.O.U.S.A. is about the serious financial situation our country is in with the national debt, trade deficit, deflating currency, etc. I knew the situation was bad, but this movie seeks to quantify exactly how bad it is. If you can wade through the sea of numbers, the take away message is quite clear: our country faces a financial crisis if nothing is done about the way our national government spends money. Today, we live on money "borrowed" from future generations, only the future generations have had no say!

Seems like a pretty huge issue. So what can we do? Well, first of all, vote to elect people who are fiscally minded, who understand the importance of the problems we face and will attempt to remedy them. (I think some of this happened with the health bill that passed. Medicare and medicaid together account for a whopping 20% of the US budget! See here for more information.)

What else can we do? Save more, spend less. When Americans have money in savings, they become debt holders for the country. When they don't, the Chinese and Japanese become debt holders, which is what has happened. Besides, it's just good practice to have some money saved in case of emergency.

This is something that I really struggle with. I would love to have more savings built up. My current job is the first time I've had a 401K and I put 8% of my pay into that. But I make such a little amount of money, that I'm not able to save much. Todd and I have so much we want to do - trips, changes to the house - but when I see a movie like this, I just want to hunker down and live more frugally. Which kind of brings me to the next movie.

No Impact Man is about the journey of a guy, his wife and young daughter in NYC who try to live for a year with having as little impact on the earth as possible. They start out by not taking elevators, riding their bikes or walking everywhere, buying their food at the local farmer's market (they eat only food that comes from a 250 mile radius). They vow to buy nothing new, only used things. Coffee, spices, and olive oil are all out. About six months in, they decide to turn off their power.

Despite its flaws, the movie was a good reminder to something that is easy for even me to lose sight of: our actions DO matter. It's so easy to get swept up in the stream of consumerism. Each take-out container, to-go cup, bottle of water(!!), soda can, toilet paper roll, individually wrapped whatever - not to mention all of the plastic stuff that looks all shiny when you buy it but then breaks six months later - everything has to end up someplace. Some of it we can recycle, or compost, or give away - but much of it ends up in landfills.

So I am back on track to live a good environmental life. I want to try to go to the Farmer's Market once a week, reduce my to-go cups (iced coffee!!), continue to bike instead of drive if I can, and start composting!

On another subject, I also wanted to say that Todd and I went to a wedding at the beach this weekend with his family. We had a great time although the weather was a little chilly. :) I was feeling run-down when we left but started feeling better soon after. I think I just needed a little R&R.

First Friday Soap Debut

First Friday was a success! We don't have the final count on how many bars of soap we sold but there was a big dent made in our display for sure. Thanks to all of our wonderful friends who came out to support us!

Here is a brief run-down. First of all, to set the atmosphere, I have to describe the building this all takes place in to you. Father and Son is ostensibly an antique shop housed in a 100-plus year old three story building downtown. It is actually one part antique, two parts vintage clothing, three parts retro stuff from your childhood - and the top floor is broken up into several artists studios. It's a pretty funky place (with no air conditioning.)

So anyway, the evening started out kind of slow. When we got there a little past 7, the band was warming up downstairs, there weren't many people browsing. Some of our friends began to stop by and we had time to chat with them. When the third, behind the scenes, member of 808 arrived, it was time for the champagne toast!

Things started to pick up around 8 and then got really busy between 9-10. The whole night we were doing a raffle to give away a couple free bars of soap. That gave us a good conversation starter when people walked into the room. I was a little nervous to start, but it definitely got easier. I had a hard time seeing myself as an "artist" the way I felt people would see me. That's all new to me!

My favorite thing was that a couple of people came in and were really blown away by the soap. They'd say "whoa!" like they'd never seen anything like it before. One guy in particular was really enthusiastic about it. It was a neat crowd and a very good night.

Unfortunately when it was all over, I was totally exhausted. I had a busy week preparing for soap, and recovering from Boston. I've been thinking so much about the whole experience up there meeting everyone - and still missing Paul. The last couple of days I haven't felt quite right, almost like I'm about to come down with something but no real symptoms yet. I'm hoping with rest and trying to take it easy I can fight it off. I can always hope!

We are off to the beach today for a wedding. We'll be spending several days there with Todd's family and I'm really looking forward to it. I really wish I felt better! I will have to listen to my body and will continue to nap and hydrate as much as possible.

Pictures from top: our soap display; Elaine and I at our first First Friday; front window of Father and Son.

MutantFest '10

This past weekend, Todd and I traveled to Boston for my best friend ever with CF's funeral. He died back in December but his family waited until now to have a second service for him. Paul would have been thrilled at the number of cystics who traveled from all over the country to be there - count us - 15!

Although it was difficult, it was great being there and meeting so many people who I have known only online (except for one who I've met and two who I've talked to on the phone) for a number of years. It was also nice to meet Paul's parents and brothers.

We did a lot of other things while we were in Boston. After we arrived on Thursday, we rode the train about an hour to see my great aunt and my mom's cousin and his wife. That was cool. Hadn't seen them since my brother's wedding. Even got to go to their house/farm and see her horses, chickens, golden retriever and six-toed cat!

The next day we met one of Todd's cousins for lunch in the historical part of Boston. It was a nice walk there through the Common and by a lot of other historical sites. It was a perfect day to walk around outside. After a good lunch with Kim, we got ice cream and walked across the river to the Bunker Hill monument and U.S.S. Constitution. After a short rest at the hotel, we wandered around another part of town and ended up stopping for dinner at a place right next to Fenway Park. (Paul would have approved.) We had a beer at the famous Boston Beer Works afterward.

All-in-all it was a great trip.

The minute I got home, my attention turned to soap. The debut of 808 soap is Friday - tomorrow! - and then we leave Saturday to spend a few days at the beach with Todd's family for a wedding. In lieu of a website, our soap has a facebook page. If you haven't already, please become a fan so you can stay in touch with what's going on with us. :) I will also be posting pictures of First Friday as soon as I can.