Tales from a Long Lost Blogger...

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.

 

Comments

[RA Guy]

I recently saw all of the photos that you posted to Facebook during your recent trip to Paris. I love love love how you take awesome trips all the time!

I'm so happy to hear that the meds/biologics are working well for you Thanks for sharing your experience with healthcare in Massachusetts. (Reading about 'riding the T' bought back memories of my years spend in Boston.)

I too am looking forward to Seamus Mullen's new book!

[Jane Abrams]

I'm in Boston now too. I cried when I found out there was no waiting period and no huge co-pays. I go to Mass General and it's a similar setup. I love my new rheumatologist. I am also well controlled and things are looking up. I am glad for you as well. And the T here rocks!

[britta]

Your posts always pump me up to know that I can beat my arthritis even if that doesn't mean remission and complete pain relief! Thank you!!!!!

[Amy]

Welcome to Boston! Glad to hear someone isn't complaining about the state of health care, here. I have HMO blue and haven't had troubles, either. Glad you are doing well and are feeling encouraged!

[Linda P.]

First, don't feel guilty! I'm not in remission and I'm 100% happy for you!

Second, I'm not in remission, but after a year, my rheumatologist has hit on an Enbrel, Plaquenil and Diclofenac combination that has brought me back maybe 50-60% of the way in my day-to-day life. Most days, I can stay out of bed, if I can no longer jog, for example. I can still play the violin--badly, some days--even if my stiff and swollen fingers make it impossible to play in the orchestra any longer. Like you, I have met the improvement with a mixture of emotions, with fear definitely being one of them right along with gratitude. So, yes, I experience that same mixture of emotions, too. The unpredictability of these autoimmune diseases ravages our lives as much as the other symptoms.

[sara]

Thanks for all the support! So great to hear from you all.

[Sharon]

I was on 50mg Enbrel every week for about a year when my health insurance ran out....after I stopped my shots I realized I didn't need them anymore and was in remission! I have been without my meds for over a year and a half and trying to control any lingering symptoms with enough rest, good diet, etc. So far, i've been successful, and hopefully I won't experience any flares anytime soon! But for now I am enjoying a shot-free life....

[Marietta]

So good to see you blogging again! Regardless of remission or flare, RA will be with you somehow, even if only in the back of your mind. It is wonderful to read about someone doing well on meds!

[Kat]

Hey Sara, I am so happy for you. My rheumy has been working me off my Methotrexate for the last year or so. It's a slow moving process but I am down to a dosage that is basically a joke, in my opinion. Soon enough, I have a feeling I will be on a dosage that is basically a placebo. What a day that will be!

I do relate to your thoughts surrounding your identity. What has struck me is that I never had it "bad" so I always felt like I was some sort of an intruder looking in on this club. I was lucky - my RA was caught VERY early and responded quickly to meds. A lot of the pain and suffering was prevented.

Still, to imagine a life without RA in the back of your head somewhere...it's strange to me

[jodi]

nice to see you posting again here. xo

[Kelli]

Hi! I did have an experience like you have. Or I am experiencing that. I have an undifferentiated autoimmune disease and was on plaquenil for 5 years. The plaquenil controlled my joint pain symptoms and lymph node swelling. It also made my labs go back to normal. Gradually I had more muscle pain, though, which turned pretty debilitating. They found I have a toxic myopathy. Now that is improving and my autoimmune labs have remained normal. So I have been getting back to yoga and hiking (though I broke my leg doing that a few weeks ago----yuck!). It is SO strange because I'm doing things I haven't in a couple of years. While that feels great, it's like my brain has to catch up that I actually DO feel somewhat better. It also feels like a cloud is going away that has been there for awhile and it is strange to adjust to. The possibilty that my muscles will go back to completely normal with my labs being normal also seems so strange, but exciting! This chronic illness experience and the remission part currently just further resonates with me to enjoy each day for what it is without worrying too much about the future and relishing in the ability to do whatever 'doing" is for that day. :) Counseling has helped me a tremendous amount. I hope this helps. :) Here is my blog: http://intricately-connected.blogspot.com and email: [email protected].

[Cynthia]

Yay! So glad your "back.". I'm so happy life in Boston is going great and that you are potentially experiencing the big "R"!

[Hannah Mae Smith]

wow, what a nice place, I'm dreaming to visit that someday.. :)