new symptom of the day

Lupus is so bizarre, symptoms change on a daily basis.

I was feeling pretty good on Friday night, chatted with my mom and was fairly upbeat about everything. Then, I woke up around 1 am with swelling and pain in between my ear and my jaw. It hurt so bad, I couldn't sleep on that side of my head! Of course it's the weekend when doctors go into hiding, so I didn't know what to do.

I did some googling and self-diagnosed that I probably have Sjögren's Syndrome. It often goes hand in hand with lupus, and it involves swollen salivary glands, which are just next to the ear and jaw.

On top of this, I have a rash running down my neck and chest. I assumed that this was associated with the malar rash on my face, but now I'm worried that it's hives caused by the Plaquenil. Arg. I really don't want to have to stop taking the Plaquenil because the other drugs I would have to try and much more potent and yukky.

I'll call the doctor tomorrow because I'm willing to self-diagnose for the weekend, but I come to my senses when Monday rolls around. Hopefully I'll be able to get some answers over the phone.

welcome to lupus boo

So, a friend of mine said once that blogs were self-indulgent. Well, some are and some aren't. I had a blog to post photos and updates about my baby-to-be -- that was a blog about sharing. I have a blog for my retail shop and that's about marketing.

Well, this blog is about self-indulgence. If you don't like that then luckily for you you don't have to read it :)

I wanted to start my lupus blog. First off, lupus sucks. This isn't really up for debate, I don't think you'll find anyone who disagrees with this statement. There are so many reasons that lupus sucks. Pain throughout your entire body, both muscles and joints. Random low-grade fevers. A big ol' rash all across your face (that hurts AND itches, joy joy). Sensitivity to sunlight - what, now I'm a VAMPIRE??

I was diagnosed a couple weeks ago with lupus. It shocked the hell out of me. I went in to the doctor because I had a little rash on the bridge of my nose. I was afraid it was skin cancer, but my doctor didn't think so. She tested for all sorts of things, and my tests came back "sky high" for lupus.

This is not news I was in the mood to hear. We have a 14 month old baby, have recently moved to a new state and just started a business with my husband. I really felt like we were *just* hanging on and then WHAMO! -- lupus??? what the heck.

So I've gone through the gamut of emotions -- sadness, anger, "why me??" etc. I am working on acceptance, but it's going to be a while.

There is no cure for lupus. Treatment ranges from taking anti-inflammatory drugs (aspirin, advil, etc) to anti-malarial drugs to corticosteroids. I started taking Planquenil 2 weeks ago, and went in for tests this morning. I'll find out the results in a couple weeks when I go to the doc.

And on the topic of the doc. Lupus is generally treated by a rheumatologist. The guy I've seen so far is a Putz (capital "P" intended). I'm only going to him until I find someone new. This doc blew off my questions about any alternative or complimentary therapies and when he heard I was breastfeeding, he said bluntly Oh you'll have to stop...like it was no big deal. And as a matter of fact, I'd have to stop that day because I needed to start taking the Planquenil *that evening*. Yes, I'm going to just *stop* breastfeeding my baby today, it's that simple. Umm, no. I went home and looked up the drug, and it's classified as safe for breastfeeding. So doc=lame-o and I won't see him any longer than I have to.

I guess this is a long enough post for today. This blog will basically be my ranting and raving and sharing how I am dealing with this interesting/frustrating/sucky turn in my life. It's mainly for me to get my thoughts out of my head, but maybe some other folks will benefit if they are going through similar stuff.