The Single Gal's Guide to Rheumatoid Arthritis

Reclaiming Headstand

This morning, I woke up earlier than I tend to on a weekend.  I could hear birds outside, but with the exception of a few dogs being taken for their early morning walk, my neighborhood still felt quiet and asleep.  I always love it when I manage to wake up early- it feels like I am stealing time, so I thought, what better way to use it than to get in a really good yoga practice. I admit that lately, my practice has fallen into a bit of a rut- but today, I felt motivated to really, truly practice rather than just go through the motions of the sequences I normally do.

I laid out my mat and opened up my blinds so that I could see the street and sidewalk, wet from the rain that had passed during the night. Then I got on my mat and began. I pushed myself more than I usually do when it is just me, and it felt really good. My left wrist didn't protest too much when I went into plank pose, and after a few sun salutations, the stiffness left completely. Even though the air was slightly cool, I was building up a lot of heat on my own and was thankful for the breeze coming in through the window. It was one of those practices where everything made me feel good and strong, so when I reached the end of my vinyasa sequences, I had an idea: what about headstand?

When my RA first began, my yoga practice took a huge hit. It practically disappeared, and when I could practice, I mainly did restorative poses, and that was it. Getting up and down off the floor was taxing enough of a workout (actually, so was getting out of bed). But slowly, I managed to build my practice back up over time, and poses that I had thought would be off limits forever like caturanga, plank and even crow pose, slowly became options again over the last few years as I've gotten stronger and my RA has receded.

There was only one pose that still had that permanent 'off limits' label on it: headstand. Back when I was in PT, my physical therapist had put the kabosh on practicing headstand...ever. Given that my cervical spine had been a site of pretty bad inflammation, it was completely understandable, and I have heeded his advice all these years later, even though my neck (knock on wood) hasn't bothered me since before the Enbrel really kicked in and started working, which was over four years ago. 

So this morning, I thought, well, why not?  Am I wanting to do it because of my ego? Am I feeling cocky and bold, or am I just feeling strong and healthy?  I decided it was genuinely the latter, and that if I listened to my body, it was telling me it felt like being upside down. I knew I could practice forearm stand or handstand, but I'm not really strong enough to hold either of them for very long, so I thought, well, I'll just try it. I dragged my mat over to the wall and set myself up so that I could use the wall if I needed it. I got into position with hands clasped and my forearms making a V shape on the floor with the top of my head cradled solidly between, and then walked on tippy-toes until my hips were positioned above my shoulders, but with my toes still on the floor.  All felt well in my cervical spine, so I took a breath and pushed my toes off the floor, bringing my heels to my bum in a kind of half-way-there headstand.  All still felt fine, so I slowly extended my legs up....and it all still felt really fine! In fact, it felt good!

I forgot how much work headstand requires- all my muscles were engaged, from my shoulders and arms to my abs to my legs. It really is a great full body workout. And it felt really fun to be upside down again! The last time I practiced headstand was probably summer of 2007...thinking about how much has changed in my life since that time is pretty staggering. I've moved to a completely different city for a new job not once, but twice. I've traveled to Argentina, Austria, Belgium, the Czech Republic, Egypt, France, Jordan, The Netherlands, Peru, South Korea and Uruguay. I've fallen in (and mostly out) of love and become an aunt to two of the coolest, smartest little girls out there.

And now, in addition to all of that, I have taken back handstand. Take a hike, off limits!

 

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.

 

Kat Elton's A Resilient Life, or the book I wish had been around when I was diagnosed with rheumatoid arthritis.

First off, I have to confess. I am sooooo overdue on putting up this post that I feel I can't begin to write about the book without first apologizing to the author, Kat Elton.  Kat kindly contacted me over the summer and asked if she could send me her new book.  I told her yes....but that it might take me 'a little time' to get to reading it since I work full time.  I also knew that I might be moving to Boston, and let's just say that 'a little time' has turned into nearly half a year.  

But let's get to the good stuff. A Resilient Life: Learning to thrive, not just survive, with rheumatoid arthritis, is quite literally the book I wish I had been able to find the day after I had been diagnosed with RA and went searching for a first hand, personal, yet informative and comprehensive account of life with RA.  When I stood all by myself in that Barnes & Noble on Lexington Avenue, I wanted desperately to find a book that would cut to the chase but would also offer hope- realistic, practical hope, and most of all, I wanted to know that I was not alone, that there were others like me. 

And that's the great thing about Kat: she is a lot like me. She's young, active, and determined to live a full life. And she feels this way even though she has RA.  Unlike me, Kat was diagnosed at the age of two with JRA, so she's a veteran of this crap disease, and this comes through in the book- she's clearly lived what she's writing about. One of my favorite aspects of the book is how it is designed to be a practical guide- there are worksheets at the end of every chapter to help you sort through and organize feelings, game plans for pain management and flare-ups, and doctor appointment checklists.  The book is broken into chapters covering everything from how to be a patient and advocate for yourself to chapters about pain, the disease itself, nutrition (but NOT in a preachy or miracle-cure way!!!!), alternative treatments, and sleep. 

After getting the book in the mail (full disclosure: I received a promotional copy of the book, but did not promise to write a good review about it, or to write about it at all for that matter), I got really excited and wrote to Kat. I asked her a few questions, and she shared the following with me:

Why did you decide to write the book?

I decided to write the book when I was going through a sustained flare up. I was thinking I'd  like to teach a class for people with RA that address all the things we deal with 24/7 but are rarely discussed by doctors or health professionals except in a superficial way, like sleep issues and stress. I asked myself the questions, "What are the areas in life that are most affected by the RA and vice versa? Where have I had to figure out realistic answers for myself because the experts don't have the time or inclination to help me?" So I came up  with the 10 things that ended up as book chapters, and when I began to talk to friends about it I kept hearing, "You should write a book!" After about the fifth time I heard this I decided, well why not, and once I began writing I didn't look back. Writing the book gave me a purpose at a time in my life when I was needing one and I think it helped  pull me through the flare quicker because I knew everything I  was going through was experience with which I could help others.

 What do you hope people will take away from reading the book?

Mostly I hope that people will come away with the knowledge of just how resilient and strong they actually are. I  also hope that people can always remember that when it comes to their body they are always the expert, health professionals are educated, paid consultants whose job it is to give them  advice, not to  tell them what they have to do. As patients we are taught to grin and bear it but in reality to live resiliently with a chronic disease you have  to be a bit of a maverick. I hope people can come away realizing that true health is not the absence of disease, it is living life fully and with compassion, recognizing mind, body and spirit. I think most people don't give themselves enough credit for being the amazing survivors that they are, and I hope people can come away believing in themselves and their ability to heal.

Anything else you would want people to know about you and/or the book?

I think that because I walk in your shoes every day I have a very real incentive to find answers that are realistic and true,  not  ones  that just sound good. I keep working hard to continue that quest on behalf of myself and others.'  

You can find the book, and find out a lot more about Kat at her website, katelton.com. 

Disclosure: I received a promotional copy of this book. The opinions expressed in this post are completely my own and were in no way influenced by anyone but me.

 

On My Own

When I moved into my own place for the first time, I thought I had finally achieved heaven- true independence!  Little did I know what was in store since my RA was just getting ready to announce itself.... read the article here at MyRACentral.com and then leave a comment. Do you live by yourself? If so, how have you adapted?  What do you think are the drawbacks and the benefits? 

 

When the Pain Isn't Caused by the Disease

The photo above is one I took of a statue in Brussels.  Legend has it that if you rub the statue and make a wish, you will get your heart's desire. Unfortunately, life isn't always so legendary. Read my latest post on life and love here.