Saturday, August 27, 2011

You don't look sick... but you do look tired.

Those of us who are lucky enough not to have any external manifestations of our auto-immune disorders often run across this loaded observation: "You don't look sick." That is to say, those of us who have (at least so far) escaped deformed joints, canes, crutches, or other visible signs of disability are frequently in the position to explain how exactly it is we could be ill when we look just fine.

Sometimes I think it's meant as a compliment- throughout all of this bullshit, I have managed to remain unscathed enough that people would not have guessed I have a chronic illness. Sometimes it's more of an accusation, implicit in which is the assertion that this disease can't be all that problematic if I'm walking around looking normal. Either way, it's often a little difficult to know how to respond, and on the wrong day it can really put me on the defensive even when I have no need to be there.

Anyway, today I had kind of an ugly experience in a major department store that was a direct consequence of not looking sick.

My fiance needed pants, so we dropped by this store to pick him up some jeans and ended up shopping around for a few minutes and grabbing a few shirts. Because department stores magically make ringing up 7 items into a 20 minute ordeal, we were standing there for a while and the employee seemed to feel the need to make conversation. We had purchased a $5 coupon-thing that gave money to charity and entitled us to some discounts around the store, and the clerk was recommending to my fiance we shop around some more to take advantage of it when this little gem popped out of his mouth:

"But she looks tired, she wants to go home."

Sick or not, no one likes being told they look tired. It's an insult (It is. Really. No one ever says, "Wow, you look fantastic- so tired!"), and I can't imagine why someone in customer service would ever say it. If I were a regular, healthy girl, it probably still would have bothered me because hey- it's kind of rude.

But I'm not a regular, healthy girl. My fibromyalgia is raging out of control and I've been feeling like ass for a couple months. As we all know, one of the main symptoms of fibro is being tired as all hell, both from being in pain and just generally being fatigued. I'm not tired because I didn't sleep enough and I'm not tired from walking around the mall. I'm tired because I'm sick, and telling me I look tired makes me acutely aware of the fact that my so-called invisible disease isn't really all that invisible.

I'm pretty confident this guy would not have told a cancer patient that he or she looked tired, or someone using crutches or a wheelchair. He wouldn't have said it to someone who was injured, or someone with a cane. But he did say it to me. Obviously, there's no way this dick in the men's department could know that I have fibromyalgia because Hey- I don't look sick. And while I would generally recommend in any circumstance to avoid observing someone looks tired (see above re: rudeness), it's worthwhile to consider that for some people, looking tired is the only outward manifestation of their pain and disability.

Not looking sick is can be a mixed bag- on one hand, it means that I've kept my RA under control and I count my blessings about that almost every day. But on the other hand, it means that people can't and don't guess what's going on inside. What this guy probably thought was a flippant, unimportant observation made me feel damaged and insecure.

At the time of The Comment, I kind of whipped around and turned my back to the guy, because I felt this rush of emotion and I got a little paralyzed about what to do. My fiance was looking to me to decide whether he should respond, but because I just looked dazed he was afraid of embarrassing me and said nothing. I ended up scampering out there as fast as possible, but as soon as I was in the car I regretted it.

This whole not-looking-sick thing is part of why there is a lack of awareness in the general population about what our community is dealing with, and as a feisty representative of the immune-challenged (or is it immune-gifted? I can never decide), I should have stood up for myself. I missed an opportunity to give someone a little insight, and that's a shame.

Also, I bet he would have felt like an asshole, and I wouldn't have minded that either.



Wednesday, August 3, 2011

Oh, and this bitch needs a redesign.

One more thing I did while I was off on blogcation is learn web design. This bad boy will be getting redesigned ASAP. Ugly green backgrounds shall not stand!

Yes, I do exist.

So, hey there world, I sort of forgot I had a blog. I guess I didn’t forget forget, but I kept thinking I’d write something, and then I didn’t, and it just became a thing I didn’t really engage with anymore. But then I went back and opened up a few of my old posts and was really impressed by how long-winded I was and how many comments you lovely people had left.

I guess the reason I’m coming back is that I still don’t see much in the online RA/Fibro communities that sounds like something I would say or do. I am not zen. I refuse to slow down, I am not going to take moments to be mindful of the way RA has changed my life for the better (it hasn’t, I’m sorry, I refuse to even entertain this idea), and I am going to use the word “fuck” a lot when I tell you how much it sucks. I am not poetic, I am not deep, I’m just a girl with a disease or two.

A lot of things have happened since the last time I posted. Let’s make a list, shall we?

1. I switched from Humira to Enbrel, which shall heretofore be known as The Elixir of Happiness and Glory.

2. My RA got much better, and my Fibromyalgia got much worse.

3. I quit my teaching job for a whole blogful (for those of you using the metric system, a kiloblog) of reasons, most of which are irrelevant to what we’re talking about here. Now I’m in grad school (for either the 2nd or 3rd time, depending on how you count).

4. I got engaged to the excellent gentleman referenced previously in this blog. We will be getting married whenever all the women in my life collectively bully me into giving a flying shit about planning a wedding ceremony. Probably this winter. No, you can’t see pictures, because I will be wearing a wedding dress and that’s terrifying.

5. I tried every pharmaceutical under the sun to help Fibro, and I’ll probably write a whole post about this because, well, it’s my blog.

6. My rheumatologist officially gave me permission to curse after I blurted out, “Dude, I am sleeping like shit,” and then apologized profusely both for calling him “dude” and for swearing. No confirmation on whether or not it’s ok to call him dude.

7. I got Netflix streaming. I’m not even going to PRETEND that other chronic illness sufferers need to be told why Netflix streaming is awesome.

So that’s that. You’re all caught up. I really do plan to start writing again, so everyone do get appropriately excited. I’m expecting to yap a lot about going on and off various SNRIs and the delicious array of completely bizarre side effects one gets from that, panic periodically about how baaaaadly I want to have kids and how convinced I am that I am going to have flipper babies because of all the medications I’ve tried, list all the words and phrases I have baffled my fiancĂ© with while trying to explain how to rub my muscles (“Can you like, SqueezePush, but not with your fingers specifically so much as with your hands in general? NO DIRECTIONALITY, NO DIRECTIONALITY”), stuff like that.

Saturday, July 18, 2009

I added some RA blog links over to the right.  If you don't mind being affiliated with my stubborn, cursing ass, let me know if you'd like your blog linked as well.  

I do occasionally post on the rheumatoid arthritis twitter twibe (twibes.com/rheumatoidarthritis) and I'd love to see that be a more active community- so if you do the twitter thing, go there.  I don't really tweet about RA on my regular twitter so if you've followed me on there expecting that, sorry.  No wait, I'm not sorry, I'll tweet about whatever I darn please.  


Humira Humira

Humira and other biologics have been in the news a lot lately due to the legislation about patents and development of generics.  Obviously, I'm all for lower-cost alternatives so I hope that a balance can be struck between making it cost-effective (read: sufficiently profitable) for companies to keep working on RA meds and making it affordable for patients to get medication.  

I've now had 5 shots of Humira (2.5 months worth), and I think it's helping.  With RA, it's so hard to know- the disease fluctuates naturally, so it takes a little bit of what my dad would call "long term data" (my dad loves data) to determine if you're actually getting better.  

Things I've noticed:
-I have less large joint pain- my hips, shoulders, and knees have been much better.  
-I have less intense inflammation- my joints have not been doing the hot and swollen thing quite as much.  It's not absent, but it's definitely less frequent.  
-My sedimentation rate has decreased by about 15 points.  

I have had to take prednisone a couple times for flares, and I am taking Arava (Leflunomide) as well, but I would say that the addition of Humira has definitely been a benefit.  

My insurance forces me to get my Humira from a mail order pharmacy which sends it express mail, packed in styrofoam and icepacks to the hilt.  I think it's weird, but since when does insurance make sense?  Speaking of insurance, I almost choked when I saw my recent receipt for a three month supply of Humira: 



In case you can't see it, that states that I pay $62.50, while my insurance company pays... $4,570.31.  Which is insane.  I'm assuming that the drug name "adalimumab" means "from the eyelashes of unicorns" or "leprechaun drool" because I can't think of any other reason for it to cost quite that much.  

The injection pen is pretty sweet (not four thousand dollars sweet, but cool).  It makes the whole 'stabbing myself in the guts' procedure much easier, since I only need to graze the top of the thing to get it to inject.  I do my injections about 2 inches away from my belly button in my abdomen, requiring a hilarious sequence of contortions that allow me to a) hold my belly taut enough to inject, b) hold and push the pen top, and c) squash my boobs down so I can see the window in the pen to know when I'm done.  It stings like a bitch- not the needle itself, but the medicine going in.  I usually put a little tiny icepack (from my Humira introductory prize pack) on the injection site afterwards because I'm a weenie and the cold feels good.  

I always do this when my boyfriend is not home, because it freaks him out.  Not the needle, but just the fact that I have to do it.  I keep my biohazard disposal box in the same place I keep my tampons (regarded as "girl cabinet") but the Humira is still there in the fridge, staring at him.  He said something this morning about how I "never feel well" and it hurt me a little to be characterized that way- I'm doing the best I freaking can, you know?  RA has been a bit of a speedbump in our relationship, not because he blames me but because he gets frustrated the same way I do, and I get irritated when I feel pitied.  He gets resentful when I hide that I'm hurting, but when I'm honest I feel treated like a sick person.  Etc, etc.  We're trying to figure this stupid thing out together, and it's a long road.  I figure it's the least I can do to spare him the "sick girl" image of me sticking needles in my belly.  

Wednesday, June 24, 2009

RA and Vanity

I see a lot of other RA sufferers on the web approaching their disease with the zen route:  mediation, patience, slowing down.  There are days when I wish I was one of these people, but I'm just not.  Never have been, never will be.  It's just not who I am, and it's not how I deal with my problems.  I'm more of a "stubbornly confront" and/or "ignore adversity and do my thing" type.  It may not be appropriate to my disease, but it's going to have to suffice.  

One of the hardest things for me to deal with is the hit that my self-image has taken since I began having R.A. symptoms.  I warn you that I may come off as a bit shallow here, and I assure that I have many deeper concerns (about both my health and other non-solipsistic issues) that are simply not being addressed in this blog on this day.  

Physically, I've always been pretty.  Not the head-turning, fawned over by men kind of gorgeous, but pretty.  I generally regard the fact that I am intelligent and a decent human being to be more important than the physical stuff, but I'm used to being pretty and having the advantages that good looks afford one socially.  And then came the hypothyroidism, and then came the R.A., and then the steroids... and I don't look the way I used to.  I've mentioned before that I've put on weight, and I simply don't feel like myself anymore.  I in no way mean to imply that one cannot be pretty with extra weight- I've never been thin, even when I was a competitive athlete- but I don't look like me, and I'm less attractive than I used to be.  

Here's where the vanity came in-- I told my rheumatologist the following (in reference to the prednisone):  "I'd rather be in pain than put on any more weight."  He countered with the logic that, once I get my RA under control, I'll be able to return to the activity level that I'm used to and it will be easier to lose weight.  I simply said, "We have to do it without steroids."  He let me win, with the caveat that I will take the prednisone as per instructions if I have a bad flare.  Fine.  Since I went off of it, I've lost about ten pounds and I'm starting to feel if not normal, at least in control.  (For the record, I feel the same way about losing my hair but that hasn't been an issue with any of my meds). 

My other concern is that I've always been sort of... adventure girl.  In some ways this is literal- I used to go on long camping trips (3 weeks- 3 months) and do all manner of outdoorsy, biologist field guru stuff.  In other ways, it's more abstract- I've always been up for doing random things and having an unplanned night of silliness.  And I like being seen as this person- adventurous, outdoorsy, spontaneous- and I'm not that person anymore.  I always knew that with age this would become less of who I am, but I expected a gradual, consensual decline- not to be jolted out of it with a diagnosis.  I don't know who I am without those things I used to do (and love).  I don't want to just be a teacher, or a girl who watches way to many movies cause she's balled up on the couch, a girl who's dealing with RA.  I'm more than that- we're all more than that.  

I want my old image back- healthy, pretty, vibrant, adventurous.  I like being seen that way, not only by myself but by others.  There are a lot of smaller vanity issues- not wearing heels as much, my hands looking puffy and swollen and weird, getting told frequently that I "look tired," (Seriously world- NO ONE likes hearing that they look tired.  Never say this to anyone) and it all makes me feel... less positive about myself.  Yeah, ok, so it's shallow-- I know I should be grateful for the things I do have, and the health I'm clawing my way back to, and I am.   I'm still sad and annoyed about the things that I've lost.  And for me, this is the best possible outcome.  I don't thrive on being calm, patient, and zen.  I thrive on being pissed off about a problem and getting mad enough to fight it.   

I've learned that RA treatment is unfortunately personal- what works for one person is futile for the next.  I'm hoping that attitude is the same- I need my stubborn, pissed off thing to work, because I may lose it if I have to meditate (again, no offense to anyone- do what works!).  

Saturday, June 6, 2009

Trying something different

My goal has been to pay more attention to this blog, but the last few weeks have been pretty hectic. Examples:
- My dad had surgery for thyroid cancer again. This is the third time, but the first two were years ago and this was quite unexpected. He handled it like a champ, I was a mess (my dad and I are very close). He's not recovering quite as fast as he did before, maybe because of the nature of the surgery and maybe because he's about to turn 60. Who can say?
- I presented at a conference about 2 hours before I had a plane to catch.
- I took a WHOLE DAY off work to go out of town for no reason other than that I wanted to, creating a huge mess of work both before I left and after I got back.
- School ended, yielding a load of annoying tasks both big and small- turning in 4 different iterations of final grades, printing all sorts of reports, packing up my classroom for the summer, etc.
- I started a new (just for summer) job.

It's the last one I want to talk about. It could be argued that someone with rheumatoid arthritis who really needs to take some time to focus on getting healthy and relaxing really shouldn't take a summer job. It could be argued that I don't need the money (I mean, I always need money, but I'm financially stable). It could be argued that I'm introducing stress and responsibility into my life when I really need a break from that.

But I'm doing it anyway, and so far (read: 4 days in) I'm thinking it's a really good call, for the following reasons:
1. The way I got the job. Just about every professional decision I've made since I was 20 years old has happened in a vaguely serendipitous fashion. I tend to fall into really good situations because of someone I met at a brunch or sat next to on a plane, and I just go with it. This is entirely contrary to my personality and therefore is one of my favorite things about myself.
I met my new boss in a crowded building where I was doing an exhibition about insects and spiders, and had both crawling on me. She listened to me for about a minute, then asked if I wanted a job. I gave her my email address and promptly did not hear from her, so I tracked her down and it turned out she'd written it down wrong and was kicking herself. Based (I guess) on my bug exhibit, the fact that I'm a certified teacher, and that I bothered to track her down, she hired me on the spot to coordinate a summer camp for itty bitty kids. This whole sequence of events both delights my sense of serendipity and makes me think that this woman must be a fun person to work for. So I took the job.

2. It's a first step to (figuratively) getting out of the classroom. I've written before that I expect to have to leave classroom teaching someday, maybe due to R.A. and maybe just due to the limit I've placed on myself for taking abuse (not from the kids. LOVE the kids). Outdoor nature education is definitely high on my list of where I might go, and this is a good way to both get my foot in the door and also try it to see if I like it. So far everyone is so nice and so impressed with how much I know about Science that it's hard to see a downside (except the pay, which is cringe-inducing).

3. It's a first step to (literally) getting out of the classroom. I get to be outside all day, and it feels great. OK, it feels sweltering- this is after all central Texas- but it feels good to sweat and be hot and do things other than be in pain in a climate-controlled room. I have an office indoors and my counselors have classrooms indoors, but the kids spend a lot of time outside and I scamper between buildings about 95 times a day. I already have a stunning farmers' tan.

4. It's a good level of activity. Just for kicks, I put on a pedometer yesterday and it turns out that I walked almost 3 miles at work in addition to going up and down the stairs over and over and doing some light lifting and moving and cleaning. I hate working out, so it's nice to be getting some movement and activity in the course of doing other things. I still need to hit the gym sometimes, but this is a good supplement and definitely keeps me from getting that awful stuck feeling I get after I sit for a while.

5. It's freaking fun. Everyone I work with is so nice, kind of nerdy, and very outdoorsy. Add in a bunch of kiddos who want to learn about nature and, well, yeah. Fun is good. Fun is way better than doing what I did last summer, which was basically hanging out around my house trying to think of things to do.

So I'm doing it. And I feel good so far. A little sore, a little achy, but there is some good sore and achy mixed in with the bad, and it feels good to be physically worn out from something other than pain. It feels good to be around people who don't know my limitations- I feel more whole than I have in a long time.

(It occurs to me that I should thank Humira for this post- I'm slowly getting some relief and my ability to do any of this is partly due to that. So thanks, drugs!)