up...and down...and up...and down

man, I'm pretty sure my last post said I was feeling better...well, I was until late in that same day. Then I started feeling yukky again, and have felt yukky all week. Soooo annoying.

Maybe I caught a cold from my son?
Maybe I danced around the house too much?
Maybe I ate something unhealthy or that I'm allergic to?
Maybe I ...
Maybe I ...
Maybe I ...

This is what drives me crazy about this illness. It changes so much, and I can rarely figure out what is causing me to get sicker. I do know that being out in the light and increased stress both really screw me up, but other than that, it's hard to say.

So today I am feeling so so. Very achy through most of my body, but at least that's helped by the drugs, as opposed to low energy which just sucks.

Wish me luck that I feel better tomorrow, we're off to the hot air balloon festival!

feeling better

Man, this illness turns on a dime! I felt really crappy yesterday, and it really sucked. Today, I'm barely sore and feel much better.

Of course, Simon is coughing and sneezing today, so I kept him home from playschool (don't want to spread the germs!).

Anyway, it's so strange that this illness changes so quickly. I'm glad I'm moving back into the "feel better" direction since I had been slowly feeling sicker and sicker day by day for the past week or so. But I have no idea why I feel better!! Could it have been the simple fact that it was a rainy day yesterday, so I didn't get any UV exposure?? Oy, who knows.

not feeling so great

so, it's my birthday, and I'm just not feeling that great. I'm still dealing with the stress of my sweet baby going to playschool...he has another crying fit today as I left :(

I've started classifying how I feel into two different categories: energy and pain. When I was so sick last month, it was a combination of both...intense pain and draining lack of energy. I was having trouble even getting out of bed, much less wrangling my 3 year old child all day.

After "the big sickness" last month, I started feeling better. My skin showed a tremendous improvement, and my energy got a lot better, I could actually get off the couch.

But now the pain is coming back. Gradually, day by day, I just get a little more sore. First I had an achy upper torso, then my elbows hurt, lower back, and now much of my body just hurts.

I really hope that the medication (Imuran) starts kicking in in ways other than healing the skin. I'm still on prednisone as well, although I'd really rather get off of that medication.

Anyway, just a general update, a little whining. I'm having difficulty at this point figuring out at what point it's OK to just hang out on the couch all day and when I'm well enough to actually do stuff. Today, I'm good just lounging around (plus, it's my b-day, I deserve it! :)

My mother and I are working on a sickness scale to track how I feel, so that should be helpful when we get it finished.

the bitter post (plus some not-so-bitter)

I hate it that I have to drop my crying child off at daycare in the morning
I hate being in pain
I hate losing my hair
I want to go to the beach
I want my skin to go back to normal
I'm tired of being tired
I miss my life that wasn't filled with doctor's appointments and medications
I wish I had enough energy to get off the couch and do stuff
Summer is tormenting me now that I am a vampire
My house is a huge mess because I don't have enough space for all of our cr*p

********
on the other hand...

I love my son, husband and the rest of my family, who have been so supportive
I don't live on the streets
I have Hershey's Kisses in my freezer
There's a nice breeze blowing in my window
I finally found a doctor that I trust

lupus sucks.

today...

my elbows hurt. Why is lupus such a weird disease?? Sometimes my scalp hurts, then my shoulders, ouch, my neck, oh look, ow, my thighs hurt...and today, it's my elbows. This disease is so strange and inconsistent.

Other lovely stuff that's going on includes the fact that I'm losing my hair. My hair has thinned considerably over the past year and a half, but I think this may be serious this time. I'm taking Imuran, which is a chemo drug, so I'm not surprised my hair is falling out, but, ummm, it sucks.

I went to my (new) general practitioner doctor last week because my chest had a mild aching feeling all week, and I was worried it was pericarditis (inflamation of the sack around the heart). The doc did some tests, and it looks like everything is ok...now I'm guessing it is just an acid reflux/heartburn kind of thing. Ever since I was so sick a few weeks ago and then started taking the Imuran, my tummy and insides have been feeling all wacky, so this isn't a big surprise.

One question that has been floating around my head lately - could the Plaquenil have actually been causing my terrible rash (it certainly wasn't helping...). I went off the Plaquenil the same day I started taking the Imuran, and the rash went away very quickly. Everything I have read about the Imuran says it takes at least 4-6 weeks to kick in, so if it had an effect on my rash, it would have been unusually fast to start working. Anyway, something to ponder.

I have a doctor's appointment on Wednesday, I will be discussing test results with Dr. B.