My Medical Woes

What is Lupus like?

I said in my last post I would write about how living with Lupus is like, how it effects me now, etc. So here goes!

Daily:

Usually my days are painfree now. I can do everything a normal person does except I take a few pills every day and cannot be in the sun without super powered sunscreen and I have to try my best to not get stressed. These two things seem to be the triggers.

I have to time lunch to be at the same time everyday because this is when I take my pills (steriods). I usually take a nap a day because the fatigue still gets me. I should be on a few more drugs as well, but I have yet to get the 'script filled. One is for blood pressure and some random vitamins.

Prednisone side effects: People (medical doctors and personal friends) made me think that steriods were the most horrendous things in the world to be on. For me, so far, they have been a life saver (ok, well, I don't think I'd die without them, but they keep the Lupus underwraps). The only side effects I've experienced are chubby cheeks and a *tiny* bit more arm hair which is already blonde so mostly undetectable.

Aside from these few things you wouldn't even know I have Lupus, heck *I* wouldn't even know I have Lupus. :D

Monthly:

About once a month (give or take a week) I get blood taken and have to give urine. HAHA I guess I'll never be able to become a drug addict. ;) Seriously tho... it's no biggie. I used to really dislike it, but after getting it done SO much... it's no sweat.

I also see one various Doctor during any given month (kidney doc or lupus doc). My kidney doc is the best and thus far has been *the* doctor who has explained lupus, made sure I was ok with it, is finding me a new team of docs when I move, and has spear-headed the lupus basically alone. I see my lupus doc, but he's short on time I guess.


And really...that's all. I loathe the day another flare (flare = lupus becoming active again, pain & various other symptoms) comes but I feel more prepared for it. I'll know mostly what to expect.

The first flare was so horrid because I just didn't know what tomorrow would bring symptom wise. I didn't know how long it would last and I honestly believed it would never end. I was so anemic that I literally felt stoned/drunk for a few months. My kidney's were acting up, the biopsy sucked the big one. Every day was scary. It was awful to know that tomorrow I might not be able to think or my hands would be so swollen I couldn't work/do much of anything. Going through that all (and more) was seriously the hardest thing I've had to do in my life as of yet.

But I realize it's quite possible I'll have to go through it again and again. Which is ok. Really, it is. My illness has a name now and I KNOW it is treatable and for the most part I will be ok. It will really suck again but I will know what to expect and how to deal a little better each time. Now, next time I am flaring... you all remind me of this last paragraph. ;)

posted by Nyte @ 1:14 AM Comments: 2

What's going on now?

I was in the hospital emergency room for most of last night. What a drag. I got a massive headache... like one second it wasn't there in the next second it was a full blown migrane. I tried to ignore it, that lasted about 10 minutes. Then I started to puke almost non-stop. I got really scared because of the lupus and previous "abnormal" MRI of my head.

I called my sister (<3) and asked her what I should do. I never can decide about going to the hospital myself, I tend to downplay how bad I'm feeling, because I know the hospital emergency rooms in Canada are grossly over-used and understaffed (they're so overused because of the lack of family doctors). Anyway, sister said I should go forsure. So I woke up boy and off we went to the hospital.

Got to hospital, of course, it's packed. I puked again. Saw the triage nurse, who took me immediatly in. For once in my life, I was thankful for Lupus. Without that complication, I probably would have waited a few hours. Anyway, they hooked me up to an IV and pumped me full of drugs for the pain. About 5 hours later, they let me go home.

Now I've slept and all that good stuff... but I still have the headache. Of course, it's no where near as bad as it was.

I'm going to write a post shortly about what living with Lupus is like. So if anyone still reads this... look for that soon. :)

posted by Nyte @ 2:40 PM Comments: 1