telling it like it is

you know, i usually try and be all upbeat and positive when it comes to my health. sure, i don't always succeed. i do have my moments, but i try to keep the complaining to a minimum. i do that so people don't think i'm a whiner, mostly. i get a lot of "there are people worse off out there." while that may be true, it doesn't always help.

another part of the sunshiney/upbeat thing is that, for the most part, you can't tell that i have lupus. you'd only pick up on the signs that are there if you knew what you were looking for. so people tend to say "but you look fine!" when i tell them i'm ill. the pain and fatigue show on my face or in my voice sometimes, but that is about it. i am always worried that people will think i'm just lazy, or making it up, or that i'm a hypochondriac. there is someone that wifey knows who seems to be inventing new illnesses all the time and she gets looked at like she's nuts. i don't want to be that person.

when i go to the doctor and he asks how are you, i think the worst i've said is "i've been better" and that was ONE time. my answer is always "fine" or "good". but the truth is, if i was either one of those things, i wouldn't be in his office in the first place, now would i?

but you know what i think today? fuck it. right now, i need to tell it like it is. its my blog and i'll cry if i want to, so if you want to skip the whining, stop reading now...

i'm in the grips of a flare (disease activity) right now and it is miserable. everything hurts. it hurts to sit, it hurts to lay down, it hurts to walk. and i'm so tired. oh god am i beyond any level of tired i ever knew existed. as a blogger who is far more eloquent that i put it "Everything hurts by bedtime; my back, my legs, my head. My heart."

on top of lupus, i have sjogren's (which boils down to dry eyes and dry mouth) and raynaud's (which makes my hands and feet cold and turn blue at the drop of a hat). so i'm tired, i'm in pain, i feel weak, my eyes are gritty and painfully dry and no matter what i do, i can't get my hands warm. i'm just bundles and oodles of fun right now.

i had to actually leave work early yesterday (which i don't do unless i feel like hell) and go home and crawl into bed. i stayed there until dinner, and managed to make my way to the sofa after that until bed time. i was able to rock the baby to sleep somewhere in there, but that was the extent of my activity yesterday. if only that would mean i felt better today, but it doesn't. i hate this shit with a passion. and let me just say that laying in bed listening to life go on all around me and not being able to participate fucking SUCKS! i know that there is really nothing i can do but ride the wave and take my meds until it goes into remission, so i'm trying not to hold on to the frustration too much, but it is fucking hard.

as for the medications, i'm on steriods, an anti-malaria drug and now they are adding an immunosuppresant. this is the shit they give people who have had organ transplants to prevent rejection. yee haw! doesn't sound like fun stuff, does it?

when i first got diagnosed, wifey seemed to think that acknowledging the fact that i have lupus means the disease wins the battle, so she was always trying to be positive about the whole thing (trying to find non lupus explanations for my symptoms), which i appreciate (since i know her motivation), but sometimes it just is what it is and i don't need a positive spin, i just need a hug. i still try not to talk about it too much cuz i feel like she will think i'm not being positive about it, but the other day she said its all i talk about. go figure!

i actually overheard her telling her mother last night that i have lupus. while it feels better to hear her admit it, it still feels a bit weird. my step son asks me periodically how i'm feeling. my step daughter doesn't ask much at all. i know that for the kids especially, that is their way of dealing. they figure if they don't ask much its less scary. and that is fine with me. everyone deals with these things in their own way. but in general my disease isn't discussed much. not that i want it to be, so thats fine. it feels strange sometimes, but still fine. like when i give wifey an update on my doc appointment or recent bloodwork and the kids are within earshot. it feels like i'm talking about something taboo. i know thats all in my head, but hey, i never claimed to be sane. :-) i know she told her family and friends about my diagnosis (and the recent addition of the new meds), but not when i was around. i know they ask how i'm doing, and she tells them the truth (which is not so good lately), but they ask in texts or emails or when they speak to her on the phone, so i'm usually not around or not aware that they asked. so while she and i talk about it (more than i realize, apparently) it feels so weird to hear her say it out loud.

and on that note, break time is over and i'm outta here.

peace, love and hair grease!

the waiting game

i went to see my primary doc awhile back for some red spots that had started appearing on my face and chest. she sent me home with a script for hydrocortisone. it certainly didn't feel like a rash, but i didn't go to medical school, so i used it for a bit. no change. when i went to see her again, she said it looked like petichae (broken capillaries) and referred me to a dermatologist. that was late last year and i kept putting off making the appointment as i had too many other things going on plus changes in insurance, medical spending deductions, etc.

so, i finally got to see him the other day and he says the same thing. he also notices that my hands were turning blue (this happens often when i'm cold). he tells me he is going to have some blood work done and his office will call me with the results. i hear him say to his nurse that he wants a "lupus panel" on me. well, of course, i can't just sit and wait for them to call me when its something like lupus hanging in the balance, so i called his office a few days later. the receptionist says that my blood work is in, but the doc hasn't looked at it yet. i mentioned that i was very nervous about the results and asked that someone let me know as soon as possible. a few minutes later my phone rings. of course, i'm hoping its the receptionist. i don't know about other people's experiences, but in my experience, if the doc themselves call you, its not good news. when the office staff calls, its usually the all clear (although my pcp had one of her staff call to tell me they found cysts on my ovaries once). anyhow, i pick up the phone and its the receptionist. i think "YAY!" after confirming who she was speaking to, the next words out of her mouth were "hold on just a second, the doctor wants to speak to you."

FUCK!

he says i tested positive for "something in the lupus family", but thinks it is a more "benign" version. he tells me he thinks it is c.r.e.s.t. syndrome (basically scleroderma) and tells me my next step is to see a rheumatologist. he recommended one who happens to accept my insurance.

i have an appointment to see him on 4/16. a freaking MONTH from now.

so for now... i wait.