Talking to healthy people about being sick is like… they dont get it and they just feel bad for me and pity me and I am like ug you shut up now no soup for you.
This! Because I just blogged about this. And on here, someone understands. At least there’s that. God does that sound sad. Yup, it makes me happy and sad.
Somehow, every time I hang out with friends, and they have other people over, their friends ask what I do or where I went to school, assuming that I’ve completed my degree. They’re all in their mid-twenties, as am I. But they all have jobs and they’ve all graduated. I answer that I’m still in school. Granted it’s better than before when I had to answer “nothing” but I always feel like I have to qualify that answer, “I’m still in school [because I had to take two years off for medical reasons]” Because otherwise I feel like they will think that a) I’m like 18 or something or b) that I’m a loser slacker. I actually don’t feel bad about the path I’ve had take, or that it’s going to take me seven years to get my degree, rather than four. I am okay with it, but I’m not okay with the assumptions that I think people make [whether they actually make those assumptions, I don’t know, but I assume that they do. Yes I knowww, I’m making (possibly inaccurate) assumptions too, ha]. And then, especially when I’m drinking, I feel like they still don’t believe me and somehow, I end up talking about lupus. I HATE that I do this. HATE HATE HATE IT. Who wants to hear a sick girl talk about being sick all the time? Not me. Not anyone.
What’s worse is that sometimes I feel like it’s the only thing I have to talk about, especially with people I don’t know. I don’t do anything. I sit at home and be sick, and I go to school. Fucking thrilling conversation starters. So when they bring up something medical, I feel a compulsion to talk about my experiences because hey, I get that! You have the flu or got tested for hypothyroidism, I have a horrible chronic illness, look we’re the same! Look, I am the same as someone my age!
Sometimes they ask me questions about lupus, which I love. It makes me feel like less of a freak, and more comfortable with what just burst out of my mouth, against my will and better judgment. But other times I can see the subtle changes in their facial expressions and it becomes quite clear to me that I am NOT the same as them. They look bored, annoyed, disinterested, or pitying. Maybe I imagine it, but I don’t think I do. So I have another drink to ease the social anxiety that predictably follows, which makes my tongue looser, which kicks up my anxiety further. It’s a vicious circle that I’ve never learned from. I can’t wait until I’ve had lupus for so long that it just fades into the background, that it’s not at the forefront of my mind, that it’s not only thing going on in my life.
Oh my, that was a long post. Please excuse the negativity. I had a lovely evening with friends, until I got home and thought (read: over analyzed) about it…
Sometimes I welcome the worst pain days because then I can “justify” taking the meds that actually work (i.e. opiates).
I wish that society did not create the need for “justification” of opiate use. I remember feeling like a druggie or something; I had to convince my family and my boyfriend that I needed these drugs to be a person. I guess on some levels I behaved like an addict - I would panic if my prescription ran low, not because I wanted to get high, but because I was so petrified of the pain that would follow if I skipped a dose. I would try and wait out the pain, which only made the drugs less effective when I finally gave in. It took me a long time to accept that opiates are just another medicine. Now, if something makes me feel better I’ll take it, regardless of the stigma it may carry. I’ve been on opiates daily for two years now, and I would not be able to function without them. I don’t get “high”, I get “reduced-pain”. I’m not an addict, I have lupus.
Every time I go to my rheumatologist’s, one of my doctors says to me, after I list my complaints - which include cognitive dysfunction, pain, exhaustion, and so on - “Well you’re still doing well in school.” As if that means something. Maybe for someone else it does. But lady, I was getting an A in precalc when I was a drooling vegetable, two months after a seizure that left me unconscious and unresponsive for a week. And math’s my worst subject. I don’t see “Fails classes” in the eleven criteria for lupus diagnosis, nor really anywhere else in SLE literature. Hmmm…
My grades are not indicative of my disease state; they are indicative of my intelligence and drive, but not the severity of the illness that is running rampant in my body.
I got the first grade below an A since I’ve been back to school after my diagnosis. It was an -A. Now do you believe I’m sick?
If she noticed something on his thyroid, WHY IS SHE CHECKING HIS JUGULAR VEIN?
My boyfriend had thyroid cancer in 2011. We both like this show, but this episode was unbelievably stupid. They made it seem like thyroid cancer is a death sentence when, according to my boyfriend’s doctor, is “one of the best cancers to have” (at least his type was. I know there are some kinds of thyroid cancer where the prognosis is not as good, but those are also more rare). A twisted statement in itself, but still. It was a dumb episode that misinformed people on multiple levels. Boooo New Girl for fearmongering.
And let’s face it, if you’re on tumblr, I’m talking to you! I discovered the most wonderful “get things done” tool in the whole wide world. It’s called “self-control” (and no, I’m not being a wise ass). I downloaded it at 6 am this morning after not sleeping because of 30 pages worth of papers I have to write in the next 48 hours. Half of that time not sleeping was spent on facebook and tumblr, and because I have no actual willpower of my own, I downloaded me some.
You can set an amount of time during which you’ll be unable to access whatever sites you specify (maybe you watch too many cat videos on youtube. BLOCK THAT SHIT!), or you can do a reverse block, where everything is blocked except for the sites you specify, and there’s nothing you can do to quit the application, not even restarting your computer will allow you to access your tempt sites.
I seriously wish I discovered this sooner.
Also, not to worsen said procrastination, but the blogger that made this lovely cartoon is pretty awesome and hysterical. Check her out, if you haven’t already, and then add her to the block list on your newly-downloaded self-control app.
endless list of movies i rewatch frequently » The NeverEnding Story (1984)
Don’t you know anything about Fantasia? It’s the world of human fantasy. Every part, every creature of it, is a piece of the dreams and hopes of mankind. Therefore, it has no boundaries.
Oh my god I watched this movie ALL THE TIME when I was a kid. All the time. Falcor is the best.
(via perpetualswansong)
Hey, congrats! Unfortunately, I know nothing about being an MD or DO…I’m a patient, not a doctor, haha. It looks like you’ve already contacted at least one other blogger I would refer you to (wayfaringmd), who referred you to another one, so hopefully they’ll be able to provide you with a better answer than my “I don’t know” : ) The tumblerverse is a great source for that kind of information. My only (somewhat selfish) advice/thought is that the world needs more good rheumatologists, so keep that in mind when choosing a specialty : ) Good luck and congrats again!
PS
Any MD/DO followers, please respond if you have advice!
Bravo, Cracked. You targeted my dashboard perfectly!
I have actually had one person tell me that “All you have to do is wear yellow, and your illness will disappear” (Different colors for different illnesses, in case you think that yellow can solve anything…I’d hate for you to think that yellow can cure cancer, because that would just be ridiculous!) and “If you didn’t want to be sick, then you wouldn’t be”. Both of those gems came from the same CRAZY person. It’s now a running joke in my family, so thanks, nutjob!
Well, we knew that. But we’re super-psyched to see this little-known fact getting more attention in the media.
IUDs RULE!!! Especially for those of us with lupus, and here’s why:
The IUD can either have no hormones (copper) or emits a localized dose of progestin. Both of these are safer for those of us with antiphospholipid syndrome, as many of the pill forms of birth control can increase the risk for blood clots. I don’t have antiphospholipid syndrome, but hey, even if it doesn’t necessarily help my lupus, I never have to worry “‘Did I take my pill?!” or worry about buying tampons ever again…because I NEVER GET MY PERIOD! Woo hoo! Plus it’s extremely effective, and a baby is definitely NOT something I want (or could take care of) right now. So, overall, it’s a definite triple, possible quadruple, awesome method of birth control. For more info on birth control and lupus check out the site below, and of course always discuss the risks and benefits with your doctor (not that you have a choice on this one - a doctor is the only one who can place an IUD).
