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.
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.
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!)
- 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!)
Tuesday, May 19, 2009
What Exactly am I Crying About, Anyway?
Back in college, I lived across the hall from someone with the exact same name as me (different middle names, but same first and last). We were and are very different: she was a sorority girl, I was punk rock; she was a history major, I was in the sciences; she was a crier, and I was not. I saw this girl cry more than anyone else I've known, and it always impressed me that she could cry, hard, and then wipe her eyes and look completely fine. I do not have this particular trait. When I cry I look like crap- I turn red, I get puffy, and for the rest of the day people ask me if I'm OK in that way you do when you think the answer's no.
I've also always associated crying with being weak and vulnerable, and in my over-achiever brain that leaves me open to embarrassment. I'm terribly afraid of being embarrassed- something about the loss of control, something about looking less-than-competent, I don't know. I choose to embarrass myself all the time in front of the kiddos, but that's not the same as something unexpected, unplanned.
For these reasons, I pretty much hate crying and avoid it at all costs. But lately? Waterworks. As the kids would say, WTF?
A lot of it is frustration. Even though I know the facts of my illness, and I know this is something I cannot mind-over-matter and power my way through, I get pissed off that I'm limited by my condition. Some of it is being overwhelmed- financially, physically, emotionally. Sometimes, it's just exhaustion.
It's not like I sit around thinking about my R.A. and its implications and get myself all worked up. In fact, the times when I try hardest to ignore it and go about my business are the times when I get a sneak attack of tears.
Last Friday, some friends and I went out after work for a beer. We sat around on a back patio for a few hours and talked about random crap- you know, the usual. I got home around 9:30 and felt like I had just being run over by a steamroller. I'd had a busy day at work, and then I hung out with some friends in a low key place for a few hours, and I could barely handle it. Cue tears.
The other day my boyfriend asked about what I wanted to do on an upcoming vacation with some friends- I'm joining them partway through, so they wanted to do things I wasn't interested in before I got there (nice of them, I think). There were a few things I want to do, but have no idea if I will be able to do, and once again... cue the tears. I hate not being able to say, "Yes, I'd like to take a long bike ride through a scenic area, that sounds awesome," and I refuse to eliminate all possibility of physical activity just because R.A might get in the way. I do know that I don't travel so well with this disease (anyone else have that problem? My joints go apeshit when I travel), and so I'm going to have to compromise and hedge my bets and damnit, I don't WANT to. I like having a plan.
I've also cried because I couldn't turn the key with enough force to open the front door, couldn't grab a zipper to get out of a dress, and because I can't wear my favorite high heels near as much as I used to. Those themes of frustration and exhaustion, loss of control and pain- they reappear in the weirdest places.
The hardest thing is to explain it to the people around you that while YES, you did just have a temper tantrum about a jar of spaghetti sauce and YES, you are crying about 4 inch Steve Madden green paisley heels (seriously awesome shoes btw), you haven't lost your mind. These are just symbols- symbols of compromises you wish you didn't have to make, symbols of the things you've lost that you might not be able to get back.
Personally, I'm just not ready. I'm not ready for orthopedically reasonable footwear, I'm not ready for a 9:30 bedtime. I'm not ready to ask for help so often, or admit that today, I just can't. I fight it, and I fight it hard, and I guess fighting results in a lot of tears.
I've also always associated crying with being weak and vulnerable, and in my over-achiever brain that leaves me open to embarrassment. I'm terribly afraid of being embarrassed- something about the loss of control, something about looking less-than-competent, I don't know. I choose to embarrass myself all the time in front of the kiddos, but that's not the same as something unexpected, unplanned.
For these reasons, I pretty much hate crying and avoid it at all costs. But lately? Waterworks. As the kids would say, WTF?
A lot of it is frustration. Even though I know the facts of my illness, and I know this is something I cannot mind-over-matter and power my way through, I get pissed off that I'm limited by my condition. Some of it is being overwhelmed- financially, physically, emotionally. Sometimes, it's just exhaustion.
It's not like I sit around thinking about my R.A. and its implications and get myself all worked up. In fact, the times when I try hardest to ignore it and go about my business are the times when I get a sneak attack of tears.
Last Friday, some friends and I went out after work for a beer. We sat around on a back patio for a few hours and talked about random crap- you know, the usual. I got home around 9:30 and felt like I had just being run over by a steamroller. I'd had a busy day at work, and then I hung out with some friends in a low key place for a few hours, and I could barely handle it. Cue tears.
The other day my boyfriend asked about what I wanted to do on an upcoming vacation with some friends- I'm joining them partway through, so they wanted to do things I wasn't interested in before I got there (nice of them, I think). There were a few things I want to do, but have no idea if I will be able to do, and once again... cue the tears. I hate not being able to say, "Yes, I'd like to take a long bike ride through a scenic area, that sounds awesome," and I refuse to eliminate all possibility of physical activity just because R.A might get in the way. I do know that I don't travel so well with this disease (anyone else have that problem? My joints go apeshit when I travel), and so I'm going to have to compromise and hedge my bets and damnit, I don't WANT to. I like having a plan.
I've also cried because I couldn't turn the key with enough force to open the front door, couldn't grab a zipper to get out of a dress, and because I can't wear my favorite high heels near as much as I used to. Those themes of frustration and exhaustion, loss of control and pain- they reappear in the weirdest places.
The hardest thing is to explain it to the people around you that while YES, you did just have a temper tantrum about a jar of spaghetti sauce and YES, you are crying about 4 inch Steve Madden green paisley heels (seriously awesome shoes btw), you haven't lost your mind. These are just symbols- symbols of compromises you wish you didn't have to make, symbols of the things you've lost that you might not be able to get back.
Personally, I'm just not ready. I'm not ready for orthopedically reasonable footwear, I'm not ready for a 9:30 bedtime. I'm not ready to ask for help so often, or admit that today, I just can't. I fight it, and I fight it hard, and I guess fighting results in a lot of tears.
Sunday, May 17, 2009
Full-Time Teacher, Full-Time Patient.
I teach high school. Specifically, I teach 9th grade Science. People often shake their heads when I say that, and say something to the effect of, "I could never do that job."
It is a hard job, but I love it. I don't love grading (hate grading, actually), I don't love the bureaucracy, I don't love how much time I spend outside of work doing work, but I LOVE my kiddos and the thought of not being around to see them grow up and graduate makes my heart sink. But I know that my job inhibits my ability to manage my R.A., and I wonder if and when I'm going to have to make a very hard decision about my job vs. my health.
My original plan was to hide my illness at work. When I had to call in sick, I was non-specific and no one really ever asked. I opened up to my closest friend at work, and to one other teacher who has fibro, and that was all I planned. See... I work at a high profile school and I am generally regarded (in certain small circles) to be an emerging talent in curriculum reform. The number of times I've been interviewed and asked to present etc etc is ridiculous given the short time I've been teaching. It's not just me, it's a lot of teachers at my school. Anyway, I feel it's in the best interest for me professionally to keep the whole debilitating chronic illness under my hat.
So it shocked me when I found myself having a very frank, honest discussion with a bunch of 9th graders about my pain, my medication, my condition. As a teacher, I am very open and honest with my kiddos about things that I consider to be within the realm of "their business." I think it's impossible to teach well without having a relationship of trust and understanding. Don't get me wrong, I'm still the teacher, but I am very close with my kidlets. I did not consider my R.A. to be "their business" until one day when a (very outspoken, often tactless) student said, "Hey, what's with the limping?" I shrugged and said, "My knee hurts." He asked, "So does it hurt a lot, because you limp like, every other week."
I had to make a decision in that moment, and I decided to tell them. I said I had an autoimmune disorder that attacks my joints, and sometimes it hurts really bad, and sometimes I'm pretty much ok. I told them about how I can't consider having children (they ask a lot about when I might have kids) unless I get off my medication (Arava) because it causes birth defects. I told them that most of the time when I miss school, it's because of my R.A.
They reacted with the kind of strange hybrid of compassion and bluntness that makes 9th graders some of my favorite people in the world. Part of the reason I love teaching them is that they share my overdeveloped sense of justice and passion for fairness, and they immediately declared it "unfair" that I had this problem. Yeah, no kidding.
It has made it easier that they know. I feel more able to openly manage my R.A. at work as best I can- sitting, avoiding writing, sending kiddos on errands for me- without having to engage in some sort of obfuscation of what is really going on. It's nice to see that they care.
It's made me wonder if I should trust my administration with this information, but my gut tells me not to. I don't want to be pitied, and I don't want there to be doubt in their minds about recommending me for whatever comes along. I may need something else to come along... the hours, the on-your-feet time, the mandatory early rising- I can handle it now, but at some point I may not be able to. I haven't stopped hoping and I sure as hell won't give up without a fight, but I have to be realistic.
It is a hard job, but I love it. I don't love grading (hate grading, actually), I don't love the bureaucracy, I don't love how much time I spend outside of work doing work, but I LOVE my kiddos and the thought of not being around to see them grow up and graduate makes my heart sink. But I know that my job inhibits my ability to manage my R.A., and I wonder if and when I'm going to have to make a very hard decision about my job vs. my health.
My original plan was to hide my illness at work. When I had to call in sick, I was non-specific and no one really ever asked. I opened up to my closest friend at work, and to one other teacher who has fibro, and that was all I planned. See... I work at a high profile school and I am generally regarded (in certain small circles) to be an emerging talent in curriculum reform. The number of times I've been interviewed and asked to present etc etc is ridiculous given the short time I've been teaching. It's not just me, it's a lot of teachers at my school. Anyway, I feel it's in the best interest for me professionally to keep the whole debilitating chronic illness under my hat.
So it shocked me when I found myself having a very frank, honest discussion with a bunch of 9th graders about my pain, my medication, my condition. As a teacher, I am very open and honest with my kiddos about things that I consider to be within the realm of "their business." I think it's impossible to teach well without having a relationship of trust and understanding. Don't get me wrong, I'm still the teacher, but I am very close with my kidlets. I did not consider my R.A. to be "their business" until one day when a (very outspoken, often tactless) student said, "Hey, what's with the limping?" I shrugged and said, "My knee hurts." He asked, "So does it hurt a lot, because you limp like, every other week."
I had to make a decision in that moment, and I decided to tell them. I said I had an autoimmune disorder that attacks my joints, and sometimes it hurts really bad, and sometimes I'm pretty much ok. I told them about how I can't consider having children (they ask a lot about when I might have kids) unless I get off my medication (Arava) because it causes birth defects. I told them that most of the time when I miss school, it's because of my R.A.
They reacted with the kind of strange hybrid of compassion and bluntness that makes 9th graders some of my favorite people in the world. Part of the reason I love teaching them is that they share my overdeveloped sense of justice and passion for fairness, and they immediately declared it "unfair" that I had this problem. Yeah, no kidding.
It has made it easier that they know. I feel more able to openly manage my R.A. at work as best I can- sitting, avoiding writing, sending kiddos on errands for me- without having to engage in some sort of obfuscation of what is really going on. It's nice to see that they care.
It's made me wonder if I should trust my administration with this information, but my gut tells me not to. I don't want to be pitied, and I don't want there to be doubt in their minds about recommending me for whatever comes along. I may need something else to come along... the hours, the on-your-feet time, the mandatory early rising- I can handle it now, but at some point I may not be able to. I haven't stopped hoping and I sure as hell won't give up without a fight, but I have to be realistic.
Saturday, May 16, 2009
Rheumatoid Bed Death
I've been reading around on the internet, and a lot of girls my age are blogging about the trials and tribulations of being single with R.A. I can only imagine, and in general I'm ridiculously thankful to be attached to a wonderful guy- in fact, there have been days when I've downright needed him in a very concrete way.
...But then there's the darker side of being in a relationship when you have R.A. The side where sometimes you kind of wish you were single and didn't have to let someone else see you cry when you get overwhelmed. When you can see that the fact that you are hurting is hurting him too, and you can't do anything for either one of you. There's a lot of fear- fear that he'll leave you if this gets too hard, fear that you've stopped being the person he fell for. There's also a lot of guilt.
I know I shouldn't feel guilty for having R.A. It certainly wasn't my fault, and I'm doing everything I can about it. But there are days when I feel that somehow I've unfairly trapped my boyfriend in this relationship. I was healthy when we started dating, and sometime after he moved in with me my R.A. began. I feel as though he signed on for a healthy girl, not one who limps sometimes and takes all sorts of pills and shots. Not the one who sometimes needs help getting on and off bras (and not in the sexy way), or the one who tires out so easily at a party. I feel like he deserves the girl I used to be, not the one I am now.
The worst manifestation of this is what I've taken to calling (in my head, anyway) Rheumatoid Bed Death. That is to say that since I got diagnosed, our sex life sucks. It's no one's fault (ok, well, it's mine, but not by choice), but it's hard to feel like having sex with multiple parts of your body ache or hurt or Really Hurt. And even when I don't hurt, I'm tired. Not normal tired, but R.A. Tired.
Part of it is the weight. Sara Nash has written about the R.A. Freshmen 15, and I got that along with the Hypothyroid 15 lb. Prize Pack. I'm working on it, but suffice to say that I don't feel quite as sexy as I did when we met. It's not even that it bothers him so much as it bothers me- I don't want him to see the extra me, unclothed, because that somehow makes it more real that Yes, I am Fatter. It's not logical, but when has that ever mattered to a naked girl?
Part of it is the pain. Sometimes, sex directly makes it hurt- say, when my hips are aching, or when bending over (ahem) in a certain way makes a knee or ankle or shoulder scream. Sometimes, it's just my hands or wrists and I'm not prevented from engaging in the act per se, but it's really damn distracting when you're trying to focus on one thing, but another (quite opposite) sensation is coming from another direction.
Part of it is... all of it. I'm not at all comfortable with me right now. The weight, the pain, the emotional baggage that comes with a chronic disease. I remember being this highly sexual being, this girl who felt that infrequent sex would be a total dealbreaker. I remember aggressively seducing my take-it-slow boyfriend back when we first met. It almost seems like I'm remembering someone else now- I can remember that it happened, but I can't remember how it felt.
I feel terrible about the Rheumatoid Bed Death. I feel as though I'm depriving my 28 year-old very handsome boyfriend of the sex he could, and should, be having. What's worse is that he goes out of his way to try to avoid bringing it up- he doesn't want me feeling responsible. But I do, and I see it in his eyes that he's disappointed when I don't participate as much when we do have sex, when I can't climax or I flinch from a bit of pain. I see him get so very excited when I initiate something, and I know that's because it's become a rare treat instead of a frequent menu item. I hate it. I hate my body for putting me in this situation.
Of course, I don't want anyone to think I'm not aware of what I do have. I know I'm lucky to have a man that supports me and cares for me through this shitty, shitty time. I know I'm lucky to have someone to share evenings at home with and to rub my feet and hold my hand. It's because he's so wonderful that I feel so bad.
...But then there's the darker side of being in a relationship when you have R.A. The side where sometimes you kind of wish you were single and didn't have to let someone else see you cry when you get overwhelmed. When you can see that the fact that you are hurting is hurting him too, and you can't do anything for either one of you. There's a lot of fear- fear that he'll leave you if this gets too hard, fear that you've stopped being the person he fell for. There's also a lot of guilt.
I know I shouldn't feel guilty for having R.A. It certainly wasn't my fault, and I'm doing everything I can about it. But there are days when I feel that somehow I've unfairly trapped my boyfriend in this relationship. I was healthy when we started dating, and sometime after he moved in with me my R.A. began. I feel as though he signed on for a healthy girl, not one who limps sometimes and takes all sorts of pills and shots. Not the one who sometimes needs help getting on and off bras (and not in the sexy way), or the one who tires out so easily at a party. I feel like he deserves the girl I used to be, not the one I am now.
The worst manifestation of this is what I've taken to calling (in my head, anyway) Rheumatoid Bed Death. That is to say that since I got diagnosed, our sex life sucks. It's no one's fault (ok, well, it's mine, but not by choice), but it's hard to feel like having sex with multiple parts of your body ache or hurt or Really Hurt. And even when I don't hurt, I'm tired. Not normal tired, but R.A. Tired.
Part of it is the weight. Sara Nash has written about the R.A. Freshmen 15, and I got that along with the Hypothyroid 15 lb. Prize Pack. I'm working on it, but suffice to say that I don't feel quite as sexy as I did when we met. It's not even that it bothers him so much as it bothers me- I don't want him to see the extra me, unclothed, because that somehow makes it more real that Yes, I am Fatter. It's not logical, but when has that ever mattered to a naked girl?
Part of it is the pain. Sometimes, sex directly makes it hurt- say, when my hips are aching, or when bending over (ahem) in a certain way makes a knee or ankle or shoulder scream. Sometimes, it's just my hands or wrists and I'm not prevented from engaging in the act per se, but it's really damn distracting when you're trying to focus on one thing, but another (quite opposite) sensation is coming from another direction.
Part of it is... all of it. I'm not at all comfortable with me right now. The weight, the pain, the emotional baggage that comes with a chronic disease. I remember being this highly sexual being, this girl who felt that infrequent sex would be a total dealbreaker. I remember aggressively seducing my take-it-slow boyfriend back when we first met. It almost seems like I'm remembering someone else now- I can remember that it happened, but I can't remember how it felt.
I feel terrible about the Rheumatoid Bed Death. I feel as though I'm depriving my 28 year-old very handsome boyfriend of the sex he could, and should, be having. What's worse is that he goes out of his way to try to avoid bringing it up- he doesn't want me feeling responsible. But I do, and I see it in his eyes that he's disappointed when I don't participate as much when we do have sex, when I can't climax or I flinch from a bit of pain. I see him get so very excited when I initiate something, and I know that's because it's become a rare treat instead of a frequent menu item. I hate it. I hate my body for putting me in this situation.
Of course, I don't want anyone to think I'm not aware of what I do have. I know I'm lucky to have a man that supports me and cares for me through this shitty, shitty time. I know I'm lucky to have someone to share evenings at home with and to rub my feet and hold my hand. It's because he's so wonderful that I feel so bad.
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