The Single Gal's Guide to Rheumatoid Arthritis

Cupcake update:

I made over 100 cupcakes this past weekend for my friend's wedding in Montara Beach, California, and they were a hit, if I do say so myself. Hurrah for me!

For the most part, all the baking went very smoothly, though the German chocolate cupcakes proved a little climate-sensitive, so they had to be made again  the next morning (suckers). Not to worry,  they were no match for me, my glass of champagne and my baking mojo.

The cupcake marathon did reveal a good lesson, though. I have been feeling a wee bit spoiled about my kitchen aid mixer, but by the time I was onto the third batch of cupcakes using a hand-held mixer, my right hand decided it was so not into it.  A joint on the outside rim (I didn't even know there was a joint there, but there is) began to swell up, and then, in an act of sympathy, my right wrist and elbow followed suit. (Aren't they sweet?)

For me, this is one of the strangest and most humbling aspects of having RA - when I am feeling pretty normal and good, I get on a roll and proceed with my life as if everything is the same as before, until suddenly, a part of me super-sizes itself and I'm reminded that nothing is like it was before.  It hasn't failed to take me by surprise yet, even though I'm coming up on my first anniversary. (Gee, I wonder what my RA will get me to celebrate? How about REMISSION!!!)

In the end, this little tantrum wasn't too bad - once I iced my hand and got through all the mixing, the swelling went down pretty quickly. By the time the reception came around (after a really beautiful and moving ceremony), I was able to hold my champagne glass all night long with no problem (thank god, right!), but I no longer feel like my kitchen aid is a luxury, that's for damn sure.

What do cupcakes and RA have to do with each other?

Not all that much, except that six months ago, I would never have been able to pull off what I am about to pull off this weekend (save any baking disasters).

Tomorrow night, I am off to Montara Beach, California to the wedding of two good friends of mine, and not only am I doing that, but I am making the cupcakes for the wedding reception! 100 of them, to be exact.

Back when they got engaged, RA wasn't even a glimpse in my eye. My how things have changed, and changed again. Had the wedding been this past winter, I doubt that I could have risen to the occasion (or have risen my arms), but now that my wonder drug is working, I'm able to fly out for the wedding and spend two days baking and assembling the cupcakes, and nothing could make me happier! 

This is what's on the menu:

• Plain cupcakes (my grandmother's recipe, of course) with a rich buttercream icing, topped off with pretty, brighly colored edible flowers
• German chocolate cupcakes filled with gooey coconut pecan filling, covered in coconut pecan filling, and drizzled with dark chocolate (the groom's choice)
• Plain cupcakes filled with lavender cream and a swirl of citrus cream cheese frosting on top

It'll be a quick trip with lots of activity and traveling and celebrating, and I can't wait!

RA - eat your heart out!

Interesting statistics on the experience of RA

My Google Alert alerted me to this article, which I found interesting, especially in light of yesterday's post.

Now is the time to have RA.

If you've ever experienced a serious illness or injury, then you have probably had some pretty funny, albeit well-meant, things said to you. Let's face it, our society is not well prepared to deal with illness or unabled bodies, especially when it happens to young people who 'should' be living perfectly healthy, active lives. People want so badly to make the situation better for you (and for them), and in the process, some odd things come out. 

A really common comment particular to rheumatoid arthritis is 'Oh yeah, I have that in my fill-in-the-blank-with-a-body-part,' when in fact, what that person has is osteoarthritis, which is TOTALLY different. Jennifer, a fellow RA blogger, named her site 'Yeah, I've got that'  in an homage to this frequent but frustrating mistake.

Some people jump right onto the optimism train full speed ahead, giving you advice and suggesting things you can do, books you should read, things you should eat, not eat, try, etc., and declare that 'you're gonna be fine.' (Never mind the fact that currently, you feel anything but fine and may be tempted to slap this person silly if they keep at it.) 

And then there are the oddball comments that, in context, make sense, but don't ever really feel helpful and often make me want to scream. During my first visit with my rheumatologist, she herself said two things that struck me as strange, even though I understood what she meant.  The first, upon coming back into the room after my examination and declaring that I officially had RA, was 'but otherwise, you're healthy.'

Hmmmm.  Really?  Let's examine this statement. Other than the fact that I've just been diagnosed with a chronic, systemic disease that I will have for the rest of my life unless a cure is found, I'm healthy.  Other than the fact that I'm living in pain and unable to sleep at night and one of my toes has been eviscerated, I'm healthy.  Other than the fact that my immune system has just gone completely whack for no discernible reason, I'm healthy. Even in my overwhelmed state, I remember finding that statement so rich with absurdity that I couldn't believe she'd said it. 

The other thing she said to me, and this phrase has been echoed since by many well-meaning people when I tell them I have rheumatoid arthritis, is: 'Now is the time to have RA.'

Clearly, I didn't get the memo.

I know what folks mean when they say this.  I get it - the way RA is treated now is WAAAYYY better than it was ten or even five years ago (let alone decades ago when patients were put on bed rest and told not to move, which we now know is the worst thing you can do). People who develop RA now have a much better prognosis, much better meds, and are unlikely to end up in a wheelchair, unable to walk.

I recently finished reading Kathleen Turner's biography (RA finally has a celebrity in our corner! Hooray!) and reading about her experiences with RA drove this fact home. She developed RA in the mid 1990's and it took her forever to actually get diagnosed-no one knew what the hell was causing her feet to basically explode, and she was hobbling around in massive pain for over a year before they finally figured out what it was. It took even longer to find medicines that worked - she spent years on 'chemo' drugs (methotrexate?) that caused all kinds of horrible side effects (maybe because they are CHEMO DRUGS, people!!). She was finally able to get on trials for what I think is now enbrel (she doesn't mention any drugs by name in her book, which I think was smart) and begin to regain her strength and life back, but not before RA had taken out a lot of her joints permanently.  She's one tough woman. (I recommend the book - she has had a fascinating life, and doesn't take crap from anyone, especially the doctor who told her she'd be in a wheelchair. She told him to 'f*** off.'')

BUT, on the other hand, no matter what the intention behind saying this is, I think it's a really bizarre statement to make because to me, NO time would be the time to have RA. Or, if I have to have it, I honestly would not have chosen to have it before I turn 30, before I have met someone I'd like to spend my life with (or at least a major part of it, or hell, even just next Friday night), before I've had kids, before I'm financially in a position to take care of all my medical and health needs, and before I've lived the majority of my life out. Frankly, I don't think that NOW is the time for me to have RA. I think NOW is a pretty lousy time for me to have RA, and if I could put it off until I was 60, I would in a heartbeat. I've got a lot of life in front of me, so it's gonna be one hell of a long road, and most likely, by the time I get to the end of it, I will have spent more of my life with RA than without it.

Knowing what to say is a tricky mine field, for sure. As I said before, I understand the good intentions behind all the things people say, and I do appreciate that people are trying to be helpful. But the best advice I can give to anyone grappling with what to say to a friend or loved one who is experiencing a major illness (or any type of serious crisis) is something that has taken me nearly a year to figure out myself: simple acknowledgment goes a long way.

You don't have to say something super-optimistic or skip forward to when things will be better for them, or fill the space with advice and suggestions of things they can do and try (unless they ask you for it). Just acknowledge what's happening to them and give them the space to respond in whatever way they need.    

Horror upon horrors!

I just got a call from the physical therapist's office and my insurance company decided they won't cover my last appointment (evil bastards), so it's canceled!!!

My hip has been killing me all day long, so now, not only do I not get PT, but I don't even get to say a final good-bye to Marco.  How tragic.  On the other hand, maybe it's better this way. . .

Careful what you wish for. . .

Today will be my last physical therapy appointment (at least until something else breaks), which means I have to say farewell to Marco, my amazing physical therapist.

I've been seeing Marco since January, when my neurologist prescribed some physical therapy sessions to help combat the destabilizing effects of RA on my neck.  Most mornings, I was hardly able to move my neck at all until after I'd spent a good 15 minutes letting really hot water pound down on it in the shower.  Even then,  my superfun illness would only permit me to turn my head from side to side about one to two inches at most without lots of pain.  I became accustomed to using my waist or shoulders to swivel my head from side to side, but I gotta tell you, when walking around the streets of New York City, you really need to be able to turn your head quickly and easily just to keep from getting run over. Plus, you look kind of strange when you don't move your head at all when turning to look at people in meetings.

My neurologist gave me a list of physical therapists she recommended who were all somewhat near either my office or my apartment.  I perused through them and then chose the two I thought would be most convenient and a good fit.  My first choice didn't accept my insurance, so off the list they went.  The second choice, however, did, so I booked an appointment with the friendly receptionist for the following week.

In the days leading up to my first appointment, I kept joking around with some coworkers and friends that I hoped I'd get some really hot guy for my physical therapist who could really fix me up. Well, the old adage is true.  Be careful what you wish for - you might just get it.

I walked into my first appointment, and there was Marco. Beautiful, smiling, charming, Argentinean (and completely professional, I should add) Marco.  My feathers fell. You see, for anyone who has ever been to physical therapy before, you know that you basically end up looking like an idiot doing really silly and embarrassingly dorky exercises in weird positions, and the last thing you want is to have to do these things in front of a drop dead, could-be-a-model guy with an irresistible accent.  It's kind of like your dentist-he or she might be fun for you to look at, but just think of how you look to them, slobbering and drooling, lips pinned to your gums while they poke around your teeth. It's not hot at all.

I instantly became hyper-aware of all 15 extra pounds of me waddling about as I hefted myself up onto the table, my thighs spreading out over its surface like rising dough. Great. I couldn't do much of anything in those first couple of visits, either, so most of the time was spent with me on the heating pad or with Marco giving my neck and shoulders a massage.

Hmmm, massage, you say?  Yeah, that wasn't as hot as it sounds, either, since Marco was using a special physical therapy massage technique that was a little painful.  And, I had to lie face down on one of those table/bed things completely covered with paper, like in a doctor's office, except for the small hole at one end that my face would poke through, my arms dangling free with no place to go.  I swear I could feel my ass inflate whenever I had to assume this position. It was not a flattering angle, I'm just sure of it. Every time I moved, a loud, crinkly noise was emitted from the paper underneath me. When I'd eventually rise and sit back up, my face would be all red and squashed, and worst of all, there would be a big oily spot on the paper where it had been pressing against my face. The first time I noticed this, I was utterly horrified, and then looked up to find there was a mirror just opposite me revealing how disastrously disheveled I looked.

So. Not. Hot. 

In moments like these, I really do feel like the consummate Bridget Jones, arriving at the big fancy Barrister's ball with make-up askew and hair all asunder.  And then there is Marco Darcy, looking ever so perfect with his wavy hair, flawless smile and tan skin. Ah well.

Eventually, I got over my self-consciousness and figured he'd probably seen worse than the likes of me, and the exercises he was giving me really began to help. (Most of the time, I can turn my head from side to side all I want!)  I have a whole routine that he designed for my neck and upper body that I do about twice a week at home, and I'm getting so much stronger.  I figure what I may lack in grace and panache, I more than make up for in diligence and progress, which, after all, is the real reason I'm there.

At least until the end of today.

Pleasure to meet you. Now take off your top.

For a girl who's not really dating much these days, it's amazing how many times I've ended up with my top off lately.  In a way, you could say I've been having a pretty hot and heavy relationship with Beth Israel; I'm seeing some doctor, nurse, or technician (and boy are they seeing me) just about every week. More often than not, I wind up in some various state of undress before it's all said and done. You'd think one of them could at least take me out to dinner first or offer me a nice, stiff cocktail when I sign in for my appointment to help break the ice.

Instead, it's really so unromantic.  They get down to business so quickly.  'Hello,how are you feeling today?Great,now take off your top.' Gee. Well, OK.  Now, I've never been one to consider myself a prude. I work in contemporary dance, and dancers have to be some of the least self-conscious people you'll ever meet. Half the shows I go to see involve nudity. I'm also a yoga teacher, so I'm used to confronting the human body from an objective, anatomical perspective. In other words: I get it. The body is not a big deal. Nonetheless, when I'm told to suddenly disrobe in a cold, fluorescently-lit office in front of someone whose name I don't even know, I find I'm a bit shy and reserved. Go figure.

 

 

 

 

To them, I know it's just routine, blah blah blah.  Some of these nurses and technicians probably see a million breasts a day, among other things, but often, as I've lain on a table staring up at the ceiling while little electrodes were being stuck to the undersides of my breasts and ribcage, I've wondered if it's awkward for them, too. I'm not sure how comfortable I'd feel having to probe around and stick electrodes onto the boob of someone I just met for the first time, either. 

One time, when I was going to have X-rays of my spine done, I ended up feeling badly for the slightly-older gentleman who was the X-ray technician.  He seemed very embarrassed when he had to lead me into a small room and tell me to take off all my clothes, except for my knickers, and put on a puny cotton gown before meeting him in the other room. At times like this, I'm pretty sure they feel way more awkward than I do about the whole naked body/stranger issue.  Other times, such as with the nurse who was having a hard time getting those damned electrodes to stick since I'd put lotion on my chest, I get the feeling that this is a really annoying part of their morning.

The only time I felt downright uncomfortable was when I went for my echocardiogram.  Now, silly me, I'd been looking forward to this for some reason.  I suppose I thought it would be cool to see my heart on an ultrasound, and thinking it might be fun made the fact that I had to have one to begin with a little less scary. 

As I sat in the cardiology waiting room, noticing, among other things, that I was the only person under 30 in the room, I started observing the different nurses and technicians calling people back for their tests.  There was one older woman who seemed a little brisk, but efficient and down to business.  That would do.  There was  a superfriendly, smily, doughy-looking woman who seemed like she would definitely have some bedside manner and make one feel at ease as she poked a jellied-wand around your heart. I hoped I'd get her. Instead, I got the one dude who was older, very gruff, and large.  He barked my name out like he was giving orders at a boot camp.  Fan-f******-tastic, I thought to myself. This did not bode well. 

Into one of the back rooms was I ushered.  He handed me one of the lovely little robes that opens in the front, which is never a promising sign, and told me to go into the little bathroom in the corner to change. I came back out into the dimly lit room with countless machines and instruments humming away menacingly and just knew this was not going to be the fun little echo-adventure I'd planned out for myself. 

I laid down on my left side on the narrow bed, but before I could even get settled, Mr. Bootcamp roughly scooted me back into a better position for him (he really could have just asked).  This made me feel cramped and put my ailing neck in an uncomfortable position. By this time, my poor little heart was racing. I was a bit nervous and not feeling, I don't know. . . calm and peaceful.  He then commanded that, NO MATTER WHAT, I had to keep my breathing shallow and not move at all, otherwise he wouldn't be able to get a clear picture of my heart. Great. As soon as I heard the words 'breathe shallowly,' all I could do, all my poor lungs CRAVED, was a really deep, satisfyingly full breath. 

Mr. Bootcamp took the cold, slimy ultrasound wand and reached around to poke it into my left under-rib, causing my left breast to unavoidably hang over his wrist. (There is just nothing delicate about this, folks.)  Apparently, my breathing was nowhere near shallow enough for him. He bluntly asked me in a smug tone that suggested he already knew the answer: 'I bet you do yoga, don't you?'  Busted. 'Yes,' I muttered. I immediately tried to stop breathing all together, figuring maybe he could get it all over and done with before I passed out. That was no good either. Clearly irritated, Mr. Bootcamp started to tell me how breathing deeply was, in fact, horrible for me and how Angelina Jolie's dad had asthma and came up with a shallow breathing technique that cured it, and now he can jog long distances, and other people should really be following this technique and not all that deep yogic breathing hullabahoo, etc. (I did not make a single bit of this up, though he may have.) This tirade continued for about ten minutes.

As you can imagine, this did not improve my breathing situation at all, not to mention I was pretty sure I was going to be bruised from the damned wand lodged between two of my ribs. Somehow, I managed to steady my breathing to a rate that was passable, so Mr. Bootcamp/yoga-hater got the images he needed, and I got myself dressed and then got the hell out.

In hindsight, I wonder if maybe he felt very uncomfortable about the situation, too, and maybe that's why he was inappropriately possessed to lecture me about how yogic breathing was ruining his echocardiograms (mine, specifically), while I was half-naked with one of my breasts draped over his wrist having a heart procedure. 

I don't really know, or care. What I do know is that instead of lying there quietly like the good girl I've always been, I wish I had had the wherewithal to sit up and tell Mr. Asshole-Bootcamp to lay off, to quit lecturing me about how I was breathing all wrong and talking smack about yoga.  That none of that was helping me to breathe any more calmly and was just making it worse, in fact, and to shut up and do the echo so I could go back to work.

I know for most medical professionals, dealing with partially or completely naked bodies is run of the mill and just a job, but for those of us on the other side, it is most often incredibly vulnerable, especially when the reason you are naked to begin with is because something is wrong with you and not because you're having a really great date.  To the many nurses and technicians who have been sensitive and polite and kind while doing your job, I really thank you for remembering that you are dealing with people who would like to retain as much dignity as they can while going through all of these procedures which aren't run of the mill to us. 

And to Mr. Bootcamp: lay off the lecturing.  And maybe try some yoga- it might help you relax a little.

Congratulations, you're hired!

Before my first rheumatologist appointment, I had a total of two doctors and a dentist, each of whom I saw once or twice a year.  After my first rheumatologist appointment, I  suddenly had six doctors, (plus the dentist) a physical therapist, multiple prescriptions, orders for xrays and enough blood work to keep a lab busy for a month.

As I found out, getting diagnosed with a disease, especially a chronic one, means that you have a new, full time job, like it or not.  It doesn't matter if you already have a full time job and are swamped, and it doesn't matter if you'll actually be good at this job, either. Once you qualify, it's yours.

The benefits for this new job are lousy. There's no vacation (though you do get plenty of sick days, har har har), the hours are pretty vicious and include weekends, evenings and early mornings, and there are no retirement benefits . You can't even take a vacation from this job. But, worst of all, you not only don't get paid for it, it actually costs you.

After leaving my rheumatologist's office, where I had already scheduled a follow up appointment in six weeks time, I went immediately next door to the opthalmology department to make an appointment with a doctor there, then to have xrays of my chest made for when I went to the cardiologist about my heart murmur.  When I got back to my office for my other full time job, I called to schedule the appointment with the cardiologist and the neurologist (for migraines).  In successive weeks, I would also have to schedule two additional appointments with the opthalmologist (because of insurance, the three tests I had to have had to be done on three separate days.......), begin physical therapy sessions one to two times a week, and schedule an ekocardiogram, an MRI and more follow up appointments (and always, always, always, more blood work. At times, I feel more like a pin cushion than a person).

To say that I felt overwhelmed would be like saying that the Tour de France is a bit of a bike ride. (Side-note: go Team Columbia!! I heart George Hincapie!!) I felt completely snowed under and unprepared.  Honestly, how the f*** was I going to do all of this? I already had a ridiculously busy life filled with meetings, traveling, going to performances, receptions, yoga and squeezing in time with my friends. Now I was going to have to fit in all these other appointments and become the manager of a medical team - my medical team, remembering when I was supposed to see whom, what had happened the last time, what I needed from which doctor, etc. (And trust me, YOU have to be the manager-no one else is going to do it for you, and no one else can be a better advocate for your own health. More on this later.)

Luckily, organization has never been my weak point, so after I got over my initial phase of mind-numbing denial and panic, I went out, bought a cute little notebook and an expandable mini-file folder system (because it's not like I have an office in my studio apartment) so I could begin keeping track of all my doctors, appointments, tests taken, medicines prescribed, blood pressure and other vitals, bills, insurance requests (and denials-blah), FSA forms and receipts.

For most of December, January and February, I had between two and four appointments a week, every week.  And, at $30 a visit in copays, that was about $60-$120 every week, plus my monthly contribution of $50 to my insurance plan (I love how it is called a 'contribution,' as if I'm just overjoyed to 'voluntarily' offer up this part of my paycheck each month), and another $80/month in prescriptions and medical supplies directly related to my RA.  That works out to about $500 a month before I even think about paying for other helpful things like yoga classes, reflexology or massage therapy. On my salary, this is a hugely significant and unplanned for expense. (The sad thing is, some people have it so much worse than me. I heard on NPR yesterday morning that my age group is one of the fastest growing groups of uninsured in America, largely due in part to a foolish belief that post-grads and late twenty-somethings won't get sick and can therefore afford the risk, since most of us can't afford the insurance.) I'm fortunate in that my family is generous and currently in a position to chip in on these expenses when I need it, but many people are not, and over a person's lifetime, the costs really add up. You could say it's a bit of a conundrum. (Or impending financial disaster-take your pick.)

Thankfully, this new job is calming down a bit for now.  I've gotten the hang of it, partly, so I'm not as overwhelmed, and it's not quite so demanding for the moment.  My physical therapy is winding down (once you 'improve' enough, insurance gives you the boot, which if I had an injury that would heal and go away for good, would make sense.  What part of chronic do insurance people not understand???), so I only have one more appointment to go (which means it's bye, bye to Marco...) The initial battery of tests is over, so now it's mostly about seeing my rheumatologist every six to eight weeks, all my other doctors every six months to a year, and managing prescription refill schedules (I swear I am always dropping one off or picking one up every time I turn around), insurance and FSA paperwork and staying on top of my preventative care - yoga, bodywork and things like that. 

I'm hoping I'm not up for any type of promotion any time soon. I am, for once, perfectly content (and would prefer) not to move up in this job.  I'm hoping if I play my cards right, I can stay in this lower management position for the rest of my days and not attract too much attention from the higher-ups.  And, who knows but with all the scientific and medical research being done, maybe one day in the future, I might actually get fired!

The (RA) Freshman 15

That's right, pals, I've gained 15 pounds since matriculating into RA Academy last August.  Luckily, I think I must carry it well as my friends seem genuinely shocked when I tell them I've gained that much (either that, or they are superior liars), but it was verified by my midwife/gyn when I went to see her in April. 15 fatty pounds (trust me, it is not more muscle), all snug and comfy on my formerly trim 5'4'' frame.

It's not really that shocking given everything that happened, so I don't feel too bad about it, but let's face it, gaining unwanted weight sucks. And when you are single, 29, and walking down the streets of New York next to actual skinnyminny supermodels with ittybitty thighs and legs that go all the way up to your collar bones, it sucks even more.

As part of my reluctant initiation into the lovely RA sorority (I knew I hated sororities for a reason), I had to endure a little hazing. For four long months, I could not move or sleep, sending my metabolism into a tailspin of doom. But I could eat, quite a lot, actually, as my taste buds didn't hurt in the least.  Getting RA, it turns out, was like the freshman 15 all over again, only this time, without the crazy parties and newfound liberation that usually goes with it. Instead, in addition to having more of myself around than before, I just got to feel like crap all the time and wear ugly shoes.

It also meant I had to suffer the long, cold winter without about half my wardrobe. None of my cute, skinny jeans fit, so I had to go buy a new pair of non-skinny jeans, which was a major undertaking given that my shoulders would start screaming at me whenever I required them to exert effort, so pulling on a pair of pants meant PAIN all over my upper-body. Not fun.

I trudged over to an Express, found a pair that seemed decent and headed to the back. If there had been a hidden mini-cam in that dressing room, anyone watching probably would have thought I was having some kind of conniption as I writhed, jerked and  squirmed like some kind of heaving maniac trying to get this damn pair of jeans over my ever-expanding thighs without having to move my shoulders.  (I dare all of you to try to get a pair of jeans on while keeping your elbows pinned to your side and your shoulders stationary. Yeah, you'll look like a maniac, too.) I think I kept grunting and huffing, and I'm sure the poor dressing room attendant thought I had smuggled a pig inside. But no, it was just me. And my thighs. Luckily, once I was able to actually get them on, the jeans fit well enough, all things considered, so I paid for them and fled the scene.

Now, nine months later, I'm feeling better. The semester is over, it's officially summer, and it's time to get my ass in gear.  I've taken off about five pounds, mostly because I've started exercising again (hooray!!! My metabolism didn't die after all!).  I try to practice yoga about three times a week and do my physical therapy work out twice a week. So far, it's going pretty well.  I'm also trying to watch what I eat (and not just as it goes from my plate to my mouth) and cut down on some of the foods I like to indulge in (ie. steak frites and cheese).  I still have work to do, but I'm feeling confident that, bit by bit, it will come off. After all, now that the alien welt isn't attached to my leg anymore, I've really no excuse. It's time to get out that bikini and head to the beach, and that's exactly what I'm doing this 4th of July weekend!

PS: You didn't actually think I was going to snap the picture with the numbers on the scale showing, did you?

An update from last night:

So I didn't get any creative pick up lines when I went out last night at Loreley's, but one astute young man did ask me what happened to my arms.  When I replied that I'd gotten vaccinations for an upcoming trip to South America, his response was, "What's the electricity situation down there?"

I just don't even know what to say about that.