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.
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I just discovered your journal via a link in Sara Nash's journal. I also have RA, was diagnosed about 2 years ago. It took some time to get under control but I'm currently in remission and have no symptoms of RA. I started with the drugs methorexate which didn't do a thing for the RA and made my hair fall out by the handful. I was switched to Arava which had some benefit but still did not control the symptoms. (I was also on prednisone which was very effective in controlling symptoms but the doctor kept trying to reduce the dose, which would only cause an terrible flare up.) I started making progress when Enbrel was added to the Arava. It is the only thing that worked. I was able to get off prednisone entirely only months after starting the Enbrel. I've also been able to reduce the Arava from 20mg per day to 10mg per day. Enbrel is a very effective drug. Has your doctor suggested trying it? I know prior to the Enbrel I was very discouraged. Now, other than taking the 10mg of Arava and a once per week shot of Enbrel, RA has no impact on my day to day life. I also noticed you mentioned going out for a beer. Does you doctor allow a small amount of alcohol? My doctor says no alcohol ideal, but I allow myself 1 drink per month anyway. If you want to respond to this you can e-mail me at stacyannw6460@aol.com. I'm not sure how one responds otherwise (besides adding another comment).
ReplyDeleteStacey-
ReplyDeleteOne of the troubles with R.A. is that there is no magic bullet that makes everyone feel better. I am under a physician's care and I have a lot of confidence in him; however, this is a long process that is complicated by my very active and stressful job.
I currently take Arava + Humira, and I refuse to take any more prednisone due to weight gain and the health risks of long-term steroid treatment.
I choose to drink a small amount because it is part of my social life. My doctor frequently monitors my liver function and so far there has been no change at all, so I'm comfortable having a drink when I am out with friends.
I'm glad that you've found a treatment that works for you- I'm sure it gives a lot of us who aren't there yet hope that we'll find something too.
A think crying is just part of the journey. Usually after a good cry I feel motivated to keep going. I hope you do too.
ReplyDeleteFlip flops. Always in my purse. I switch them out. Walk/stand in the flops and then wear the pretty heels for pictures or when I'm sitting or when I "need to make an impression." My friends laugh at me but I swear by it. And I agree with Cathy- RA sucks and sometimes we need to cry to get it out and move on.
ReplyDeleteyou have no idea how happy i was to read this post. it's ok to not be ok with this potential life sentence of ugly shoes and early bedtimes. i hope you know how eloquent your writing is. fantastic blog and i look forward to more.
ReplyDeleteHi Sadie K. (and readers),
ReplyDeleteI found you via the single gal's guide to RA.
I'm working on a short article for an online publication about how RA affects partnerships and am looking for comments from either (or preferably both) sides of the story -- someone who has RA or someone who is married to/partnered with someone with RA.
If you would be interested in commenting, or for more information, or if you have any advice about who I could talk to please get in touch with me at constance[dot]brichford[at]gmail[dot]com
before June 3. (last minute!)
Thanks very much and keep up the good blogging work!
First off, you are amazing for EVER being able to wear 4 inch steve madden heels, I would die to wear shoes like that (and they do sound like seriously awesome shoes...steve madden + paisley=magnificent!!!)Anyway, that's not my point.
ReplyDeleteI cry alot, about everything. Happy things, sad things, stupid things, things hurting (and everything hurts). Everyone knows I'm a crier, and everyone has always told me that I'm the strongest person they know.
Crying doesn't mean you're week. It just means you're human. And that's allowed.
It sounds like you're quite amazing, working so much and being so active. I know it's frustrating when you're unable to do things because of the RA, but try to remember what you ARE able to do, instead of what you aren't.That's very important.
After dealing with this horrivic disease for 28 years (I'm 33 BTW),I've been through alot of things. I wasn't able to walk for nearly two years (I was 8-10), now I have a husband and a child and we go on walks through the woods every weekend. I'm not doing major hikes, but I'm not in a wheelchair anymore. Just look at where you are, and not where you are not...It really doesn't get easier, but you do get better at dealing with it.
And let the tears come!!!!!They are very freeing!!!!!
Thanks for the blog post!