It appears that I am not the only one that does not like the new Bulletin Feature that was launched this afternoon on JTV. I am happy with the ability to block people from sending highlights to YouTube, but the bulletins are just plain annoying. It’s SPAM, plain and simple. I have yet to see anything of relevance or interest in the dozens of bulletins that have been cluttering my inbox since it launched this evening and from what I see, no one else is thrilled with the new feature either. Well, that’s not true, one person was happy:
I don’t care for MySpace and Facebook has become a cluttered application playground for adults so I don’t spend much time in there either. I am not looking forward to JTV becoming just another disjointed, unorganized place for people to post useless information.
A Real Departure
We had Steak, Salad and Risotto Cakes
I had quite a day. First thing this morning I was off to my monthly appointment at the infusion center. We haven’t really “talked” much about this in the past, but it was crowded in there today and it made me think. This drug is relatively new, incredibly expensive and not in wide use. You have to be “qualified” to be put on the therapy first and then you have to meet qualifications that the insurance companies will acknowledge as meeting their requirements for coverage
All in all, the number of people on the meds is small. It’s very easy, I’ve had no side effects and other than the expense it’s a no stress kind of thing. What does get me worked up however, is the conversation in the room for the 2 hours I am there on the last Friday of the month. The nurse is wonderful and the other patients are very nice as well, but … and you knew there would be a but, didn’t you?
I used the Mushroom and Bacon Risotto from last night, added egg, dredged them in flour and pan fried them in extra virgin olive oil. It was a first and they were quite DEElicious!
I am not a big talker for the sake of talking. I’m sure that’s a bit surprising to you that read the blog and watch the broadcast on justopia.com on a regular basis, isn’t it? I am rather prolific when it comes to writing, but talking to people I don’t know well is a whole other thing.
Anyway, every time I’ve been there a woman, probably close to my age, and in a much more progressed state of the disease is there. She’s nice enough, but she talks … and she talks … and she talks some more. She does most of her talking AT the nurse, but when she can, she engages fellow patients. I really can’t take photos while I’m in there that will give you a sense for what the set up is like, so I will attempt to paint the picture here:
The facility is on the 4th floor of an office building, mostly non de-script in it’s architecture other than looking like it comes from the early 70’s. A glass and steel structure, but without the modern day sheen to it. When you come out of the elevator and head left into the facility, there used to be an enthusiastic welcome for each patient from Meagan, the former Office Manager. But she left about a month ago and we are left with a receptionist that is either shy, or just not into the business of customer service.
No matter, it’s on to the infusion room. The room is set up with 5 very comfortable chairs that recline and are lined up one behind the other and angled so that we each get a clear view of the window, but really see nothing of the patients in front of us for the most part other than the back of their chair. There is an IV pole behind each chair so that we don’t see it as the helping medicine is being dripped into us. It is a relaxing place to be. Each chair has a table next to it with a portable DVD player. On the other wall is a long counter with a computer, a fax machine and a rack with DVDs and other paraphernalia that you’d see on a person’s desk.
Below the counter are cabinets and drawers that hold the equipment. In the fridge is the liquid gold. This drug, Tysabri, a small vial with no more than an hour’s worth of medicine costs a little over $6000 a month! Yes, I did say $6000 a month. I am pretty sure that the people at the pharmaceutical company that created the drug and the cost were on another drug at the time — CRACK! Anyway, that is a whole other blog post. Navigating the waters between the pharmaceutical companies, the insurance companies, the doctors and the patients.
There’s always a basket with snacks and something to drink in the fridge. If needed, blankets are available.
I settle in each month with my computer and headset and like to hang out in my own world. I sort of treat it like being on a plane, off in solitude. But it’s never easy there with all the chatter and today was no different, just a little noisier. I like to be polite, but I began to feel like I was in one of those support group meetings that I have refused to go to. I know … I have MS. I deal with having MS. Most people that meet me would never know I have MS. If I am having a problem it’s not something that’s ever visible to others, so unless I know them, I don’t talk much about it. But today, it was a room of people talking about how much they value life and how happy they are in between war stories of falls and burns and bad veins and needing to have ports put in because there were no more visible veins to go into. It became a very depressing two hours and I just wanted to be out of there!
At one point, the woman that is there whenever I am there said something to the nurse about how quiet I am. The thing is, I just don’t know what I would say. I piped up a few times, but I don’t like to belabor the negatives and don’t like to drone on about my health. It’s just not fun and life is supposed to be fun and I’m lovin’ it!. Ok, so I am in denial, but hey! It’s been working for me just fine for 5 years, thank you very much. And I plan on it being like this for a long, long time to come.
A little after noon, I was let out into the world and I headed right for the mall. It was my first time shopping in a year and I was excited. I needed a pair of truly comfortable shoes and new clothes were well overdue. In short order I had bags with shoes and shirts and pants and lingerie and … um … a special treat.
An iPod Touch! You have to understand, I am gadget woman and it’s been killing me not to have purchased anything “gadgety” in so long. Yes, I got that very inexpensive desktop for the broadcast and a webcam, but I am talking something that can be used on a daily basis and that can connect to the internet!! 🙂
I had to get the bag out to prove I really did have a McDonald’s lunch — no one wanted to believe it!
The story doesn’t end there though. No siree. I was not through with my adventure. I was planning to go to the supermarket, but I was pretty tired and hungry. I could have gotten something to eat at the mall, but I was ready to get home and to sit for a while, so I headed to my car and I thought of my lunch options.
If the image was more clear, I could almost be a poster-woman for McDonald’s! Oh and for those of you that don’t make your way to Justopia.com, you can see the prep-camera in this shot. See what you’re missing?!
The only fast food I do is Baja Fresh or once in a while when I’m with my friend, I go to Chipotle. He likes that better than Baja. But I was not in a Mexican food mood today. My other options? Pizza Hut, Taco Bell, or McDonald’s. Eeek!
I was very hungry though. It was a little after 3pm and all I’d had was a small bag of Sun Chips at the infusion center, so I did it! Yes, I stopped in for McDonald’s! I did! I went through the drive through and took it home and I inhaled it. I am here to tell you that I finished that Quarter Pounder with Cheese, Fries and Diet Coke in no more than 10 minutes.
I wonder how many times people have been broadcasting on JTV while eating McDonald’s? Fans of Justopia.com, don’t fear, I don’t plan to do that again anytime soon.
Thanks to Callie, Tyler and Peekers for getting screen shots for me and I understand Laggie captured video as well. This may be the Justopian version of Don’t SuperSize ME. 🙂
Filed under: Entertainment, Food, How To, Technology | Tagged: Broadcast, Fast Food, Infusion, JTV, Justin.tv, Justopia.com, Lifecasting, McDonald's, MS, Multiple Sclerosis, Quarter Pounder with Cheese, Super Size Me, Tysabri |