winter is here

and it sucks big ol balls

i thought i knew how much arthritis sucked. that was before winter showed up.

it took it’s time coming, because climate change has fucked everything up so much it was in the sixties well into november. but over an afternoon and evening, it suddenly started snowing, the temperature dropped, and my arthritis pain tripled. my pain scale is all fucked up again because that pain was nothing compared to this pain, and this pain is still nothing compared to the worst pain I ever felt (gallbladder attack while pregnant. it lasted sixteen hours. it was BAD)

on the positive side, my parents are going to pay for a ymca membership for us, so the kids can take swim lessons again this winter. and (once I’ve checked with the physical therapy people) I’ll probably join the arthritis water exercise class.

speaking of physical therapy, I’ve got an appointment with them next week. hopefully this evaluation will go well and I’ll be able to learn some safe exercises that I can do without damaging my joints.

And in a couple weeks I’ll be doing a conference with all of Oldest Kid’s teachers, and we’ll see what they’re willing to do to help him out. I’m not looking forward to it at all. I’m feeling ganged-up-on already, because instead of assigning different times for each teacher, they chose one block and one room. The guidance counselor will probably also be in there too. So that’s five to one. Two if my mom means it about watching the kids for us so Wife can join me.

*snoopy dance, but slower because it hurts*

Saw my rheumatologist again this week, the steroids didn’t help much. he looked over my bloodwork and we are now pretty sure, based on everything, that I’ve got psoriatic arthritis. so that’s great.

well, i mean, really, it IS great. i am thrilled to have a diagnosis that actually seems to fit what’s going on, it makes sense, it SOUNDS right. and because we have a diagnosis, there’s also TREATMENT! I’m taking meth.

methotrexate, that is.

it’ll take time for it to get to work, and i’ve got to do bloodwork all the time and take a bunch of vitamins to make sure it doesn’t mess me up, but it’s TREATMENT

it’s not a shrug and a “well i don’t know what you want from us”

it’s not a “well we tried two medications and i saw you one single time, you’re too difficult a patient and I don’t think we can help you” (still mad? why yes, yes i am)

it’s so nice to be believed and helped.

*incoherent rage screams*

we need to burn down the medical establishment and just fuckin start over from scratch. i saw a pain management clinic this week, as suggested by my first rheumatologist because she tried two medications with me and then decided i was too much work and she didn’t want to work with me anymore.

i had to read through fifteen pages of information about how i would be treated like a drug-seeking criminal, subject to pill counts at every appointment and i should not expect to be treated like a human in pain.

i get there, and the nurse completely screws up with my blood pressure (165/155 is NOT POSSIBLE ON ME) and then she blames ME for having high blood pressure instead of thinking that maybe she made a mistake.

then I meet the doctor, who insists I need injections in my lower back to help with the pain, and why I have lower back pain, and blah blah blah we’ll probably have to do physical therapy first before your insurance will approve it. “any questions?”

well I’m not really here about my back, I’m here because of joint pain in my hands.

“we don’t really do anything with that. [continues railroading me into injections]”

so one of all, this douche can’t even listen to me or in fact care about why I’m even there in the first place, and b of all, that asshole rheumatologist didn’t even send me SOMEWHERE THAT WOULD BE ABLE TO HELP ME WITH THE DISEASE SHE THINKS I HAVE

i just

burn it all down, start over from scratch. it cannot possibly be worse than the way things are done now.

what a difference

so earlier this week i went to visit a new rheumatologist for a second opinion. fibromyalgia is supposed to be the last resort, after you’ve eliminated all the other, more likely possibilities. it always struck me as odd that that was the doctor’s first response. that, and that i had no tender points like fibro sufferers do.

this new doctor? he was amazing. he actually listened to me, he didn’t railroad me into skipping over things i didn’t know might be important or irrelevant, just let me say it all. he actually looked at my nails and feet, looked at my scalp. he touched the maybe-rash, maybe-not red spots on my cheeks that could be bad skin or the lupus butterfly rash. he actually paid attention and treated me like i was worth listening to.

readers, being treated like the expert on your own body and worth listening to shouldn’t be enough to make you cry. but it’s such a novel experience when you’re a patient who looks like a woman.

so they took a bunch of blood to rule out other stuff, but it apparently might be psoriatic arthritis. which, there is a family history of psoriasis. which i tried to tell the first doctor. but she didn’t care, because she saw a history of depression and was absolutely sure it was fibro. next week i see a pain management specialist, which will be tons of fun because i’m not even a patient of their practice and they’re already treating me like i’m a drug-seeking criminal! oh boy!

oof

hey, it’s been a while.

see, every spring and fall, for the last, i dunno, seven or eight years? the weather starts getting variable and the pressure goes up and down constantly. and I get sinus headaches. in the beginning, it wasn’t too bad, nothing I couldn’t ignore with a couple painkillers.

but as the years pass, it keeps getting worse. i ended up in the emergency room about two weeks ago because I was in the worst head pain I’d ever felt. (it still didn’t top the gallbladder pain, but it was close). the doctor insisted it was just allergies, I should just take more benadryl and some sudafed (even though I’d been taking allergy medicine and decongestants the whole time). He was weird about it, very insistent that he was right, but he still had them give me a tramadol injection in addition to the benadryl. whatever.

So I saw my pcp and my neurologist, so I have some tramadol ready to go if I need it, as I wait for fall to finally fuck off.

Yike

Oldest’s school sent home an interim report card and OUCH. he’s got every letter grade except F. I looked at his assignments and he’s missing a lot of things that he seems to be forgetting to turn in, and when I asked about a few others, he had questions he forgets to ask the teacher. So I sent an email to the guidance counselor for his school, letting her know what’s up and if there’s a way we can help him out.

luckily for me, she’s totally on the ball. i’m so glad this new school isn’t going to be like the old one, dragging their feet, denying there are problems, refusing to help this kid.

everything is fine

I’m great. my kid? not so much. they just sent home an interim report and he’s got every letter grade except F. so now the fun is going to begin. first step is figuring out how ProgressBook works so I can see what the problem is: missing assignments or failing assignments. then we’ll go from there with the guidance counselor.