Once upon a time, there was a single gal living in a city who got sick. She took to the internet to write about it and sent her woes out into the blogosphere. There, she met lots of wonderful virtual friends until one day, she moved to a different city and was never heard from again.
Well, at least she was hardly ever heard from again for about six months. BUT I’m finally resurfacing with some updates and musings for anyone out there still interested in reading.
The main reason I haven’t been writing much is because my new job has really been front and center in my life, and I simply haven’t had much time or energy to devote to other endeavors. I’ve been traveling a lot, too (New Mexico, Florida, New Hampshire, New York, Maine and France, to name a few of the places I’ve been in the last six months). I love it, but it does wear me out. I’ve also been trying to spend time out and about getting to know my new city and meet people, and it’s difficult to do that when your nose is buried in a computer inside your apartment.
But without further ado, here are some things I thought worth sharing:
Health care in Massachusetts is kind of cool. There was no grace period at all with my new job- my insurance coverage began the day I started since in Massachusetts, it’s mandatory to have health insurance. (You may have heard something about this in the news lately since there’s a little thing called a campaign going on). I know some people have their panties all in a twitch about Obamacare, but it was awesome moving to a state where the words ‘pre-existing condition’ are meaningless.
There is one Massachusetts law that is lame, though. Third party copayment assistance isn’t legal here, so no more cheap Enbrel for me via Enbrel Support, which is a sad, sad, sad shame because it rocked only having to pay about $60 a year for the liquid gold. Luckily, I have a stockpile of the goods in my fridge (legally, I would add), so I won’t have to get any for a while longer, but still.
It took me a little while to navigate the system here in terms of finding docs. For the first time ever I have an HMO instead of a PPO plan, (I know, cry me a river), so every single appointment I have has to be coordinated by my primary care physician, complete with referrals and all. My awesome rheumy from Hopkins had recommended a rheumatologist he wanted me to see up here in Boston, so I had to go through a few circles to figure out how to find a primary care physician who could refer me to the rheumatologist I wanted. After one useless appointment and a wasted $20 copay, I finally landed at one that could- it’s a pretty awesome primary care practice associated with Brigham and Women’s Hospital. It’s like a one stop shop there- they do ob/gyn services along with all the other non-specialist stuff, and my physician’s assistant has been incredibly responsive and helpful. Also, everything is online, so I can get all my test results, schedule appointments, or email any of my doctors quite easily. It’s convenient and, well, practical. What a concept.
I was able to get an appointment with the rheumatologist I wanted pretty quickly, and she’s pretty brilliant. I feel so thankful that I have had such excellent doctors (excluding the one who left my diagnosis on a voice mail) on this journey. The appointment went well, but left me a little flummoxed, if I’m honest.
Here’s what happened. We spent a lot of time going over my history- even though she had all my old records and files and had clearly gone through them, she wanted me to tell her how it had all started and bring her up to date with my own words. After listening to my story, she gave me a head to toe exam, looking at my wayward toe and asking me additional questions. After the exam, we talked some more about my current treatment and dosages. I went over in particular the sequence of events that had resulted in going from 50mg of Enbrel a week to 25mg a year ago.
And then she said a most extraordinary thing: ‘You know, not all RA is progressive. ‘ Followed by: ‘I’m not going to take you down any further since we’re just meeting, but let’s see how it goes. ‘
Now, I know that, so far, I’ve basically been a poster child for biologics. And my rheumy at Hopkins had talked to me about the possibility of spacing out my shots in the future, so this wasn’t the first time I’d heard this. I know that I’m in medical remission, and that I’ve been in medical remission for quite some time (knock on wood), but something about the way she said it struck me in a way it never had before. As in maybe I’m just in remission.
For the first time, I allowed myself to think about the possibility that I might have gone through the worst of it. What if I am one of those freak cases where the RA disappears just as randomly and strangely as it appeared? Could that really happen? To me?
I have to say, it really shook me up. Sitting on the T on my way home from the appointment, I started to tear up and feel a strange mix of emotions: relief, hope, fear, wonder, gratitude, and guilt. Obviously, it is thrilling to think there might be a real possibility that I won’t ever go through that kind of pain and disability again, but how can that be? And how can you ever know? I’ve heard from people whose RA symptoms went away for ten years only to reappear with a vengeance and a disdain for old drugs that had worked. There is just no way to know.
And I do feel a weird guilt- something like survivor’s guilt, I suppose. I mean, why should I get off so easily when there are so many people out there for whom no drugs bring relief, and the disease just tears through their body relentlessly. It isn’t fair. It’s also made me rethink my identity a little. The reality and the shadow of RA has been such a shaping presence in my life for nearly five years. While it wasn’t responsible for my last relationship’s demise, it was a factor. It was there between us every time we tried to figure out how a future together might be possible.
So it has thrown me for a little loop. Lots to think about, though in a way, it’s really all conceptual. Has any one else gone through something similar (without having their hopes dashed years later?)
On another note, I got a chance to go to Seamus Mullen’s new restaurant in NYC, Tertulia, in the fall. It’s taken off like wild fire and has been written up and listed as a top restaurant all over the place, so I’m really happy for him! While I was there, I got a chance to say hello, and he gave me a sneak peak of his book, Hero Food, which is about to be released. Based on what I saw, it’s going to be awesome, and I’m really excited about it. I’ve made two recipes from it that were part of a preview in Bon Appetit, and both were tasty and healthy and, best of all, easy. (For the record- I’ve received nothing in exchange for pumping his restaurant and book- he really is just my favorite chef, a nice person, and a great advocate for getting the word out about RA.)
A few other things I wanted to give a nod to in case any of you haven’t heard about them yet:
The Show Us Your Hands community project is kickass and pretty powerful, and developed by three really cool people I’m proud to ‘know.’
RA Warrior’s campaign to rename RA ‘Rheumatoid Autoimmune Disease’ gets two big, swollen thumbs up. This should really happen, if for no other reason than it would be way cooler to say you have RAD than RA.
That’s all for now folks. As always, take care.